When physicians see patients with medically unexplained fatigue, they often infer that this illness is due to an underlying psychiatric problem. The Authors
Ronald Reagan said to Gorbachev, “Take down that wall!” and it did ultimately fall. The ME/CFS version of that might be, “Get rid of those stubborn psychiatric ideas!” It’s a cultural problem. The authors pointed out that anytime a physician sees a patient with unexplained fatigue, their default diagnosis is likely to be a psychiatric illness.
This study will probably bring them little joy. Three longtime ME/CFS researchers have just produced another nail in the coffin of a psychiatric interpretation of ME/CFS.
Gudrun Lange, a clinical neuropsychologist, and Benjamin Natelson (the first author), a neurologist, have worked and collaborated together on everything in ME/CFS from brain imaging to exercise to cognition for over two decades. Elizabeth Unger, the head of the ME/CFS research effort at the CDC, was the senior author on the study.
A new study blasts away at a psychological interpretation of ME/CFS.
This may be a hard, hard study for anyone to refute. It was fairly large (n=63) and the study protocol – which involved consecutively enrolling patients seen at Dr. Natelson’s practice – defied any possibility of cherry-picking.
The authors used the 1994 Fukuda definition because of its more stringent exclusionary criteria (schizophrenia, bipolar disorder, melancholic depression, eating disorder within 5 years, or drug/alcohol abuse within 2 years). (While the Canadian Consensus Criteria (CCC) or International Consensus Criteria (ICC) identify a sicker and more functionally impaired group of patients, it’s possible their longer list of symptom criteria may also pluck out patients with more psychiatric diagnoses.)
Benjamin H Natelson, Jin-Mann S Lin, Gudrun Lange, Sarah Khan, AaronStegner & Elizabeth R Unger (2019): The Effect of Comorbid Medical and Psychiatric Diagnoses on Chronic Fatigue Syndrome, Annals of Medicine, DOI: 10.1080/07853890.2019.1683601
The study design was fairly simple. First, the researchers assessed the presence of comorbid diseases (fibromyalgia, irritable bowel syndrome (IBS), multiple chemical sensitivity (MCS)) and psychiatric diagnoses (present and those at least five years in the past).
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The participants then filled out a long list of questionnaires which provided data on their symptoms. (The questionnaires included fatigue, symptom, functionality and mood disorder questionnaires (Short Form Health Survey (SF-36v2); Multidimensional Fatigue Inventory (MFI-20); the PROMIS measures (Pain Intensity and Pain Behavior); the CDC Symptom Inventory (CDC-SI); the Zung self-rating depression scale; and the Patient Health Questionnaire depression scale (PHQ-8).
The researchers then assessed the effect that having a comorbid illness or a mood disorder had on the ME/CFS patients’ symptoms, functionality, etc. The idea was that having any disorder which played a role in causing ME/CFS or was closely linked to ME/CFS should make the participants’ ME/CFS symptoms worse. A disorder, on the other hand, which didn’t play a role in causing ME/CFS or was not closely linked to it might make some symptoms worse but wouldn’t make the participants’ ME/CFS symptoms worse.
Results
Mood disorders were indeed commonly found: 36% of the participants had a current psychiatric diagnosis, 32% had a past psychiatric diagnosis and 32% never had a psychiatric diagnosis.
Other than the fact that ME/CFS, like other chronic illnesses, can cause depression, the new study suggests it is probably not related at all to it.
Having a psychiatric diagnosis – either past or present – though, made no difference at all with regard to several major areas. Having a mood disorder was not associated with an increase in the number of co-morbid disorders (FM, IBS, MCS) one had. Nor was it associated with increased symptom severity, longer illnesses, more medications, onset type, disability, or importantly, the severity of the key symptom in ME/CFS – post-exertional malaise.
Having a mood disorder was associated with significantly increased scores on the depression tests, mental health as well as mental fatigue.
ME/CFS is NOT a Somatization Disorder (or Who’s the Deluded One Now?)
The first implication to draw from this study is that ME/CFS is not a somatization disorder. Somatization disorders occur when a person believes that what are, in fact, psychiatric symptoms have a physical cause (and goes doctor shopping.)
Given that interpretation, it’s not surprising that the idiopathic or medically unexplained symptoms in ME/CFS have led to a rather rich history of psychiatrists attempting to define ME/CFS as a somatization disorder. The increased rates of depression found in ME/CFS have many times been cited as a reason to regard ME/CFS as one.
Back in 1991, a large study published in the American Medical Journal, which undoubtedly got a lot of attention, asserted that ME/CFS was a somatization disorder. In 1996, Natelson argued that few ME/CFS patients met the strict criteria for somatization disorder and showed that the interpretation one made of the symptoms in ME/CFS (physical vs psychiatric) played a critical role in the diagnosis.
In a very long 1997 review, “Chronic fatigue syndrome: a 20th century illness“, Simon Wessely put ME/CFS with other somatization disorders. A 2007 German study, co-authored by Trudy Chalder, suggested that ME/CFS substantially overlapped with somatization disorder.
Since then, Maes has several times argued for a biological cause to the seemingly “somatic” symptoms found in ME/CFS, and a 2019 study, which assessed “illusory mental health” (people who thought they were mentally well but were not), found no evidence of increased IMH in ME/CFS and concluded that ME/CFS is not a somatization disorder.
The real masquerade has not been psychiatric symptoms posing as physical ones in ME/CFS – but the attempt to fob off ME/CFS symptoms as psychiatric in nature. (Image by Peggy and Marco Lachmann-Anke from Pixabay)
Since somatization is by definition a psychiatric disorder masquerading in the patients’ mind as a physical disorder, the presence of a mood disorder should magnify the patients’ symptoms greatly. Natelson et. al. pointed out that studies indicate that mood disorders are “illness multipliers” in somatization disorders; i.e. they make them worse.
But not in ME/CFS. Having a past or present mood disorder didn’t make any of the symptoms associated with ME/CFS worse. (It did, however, make the symptoms associated with mood disorders worse.) Since having a mood disorder didn’t increase any of the symptoms associated with ME/CFS, ME/CFS is, by definition, not a somatization disorder.
It goes deeper than that. The fact that having a mood disorder did not exacerbate the symptoms (fatigue, pain, post-exertional malaise, etc.) one associates with ME/CFS suggests the neurobiological causes of the two conditions must be different. That may come as something of a surprise to researchers who assumed that at least the fatigue in the two diseases was probably being caused in a similar manner. This study suggests, though, that other than being an excellent way to cause depression, ME/CFS doesn’t share much in common with depression biologically.
In other words, ME/CFS, like many other chronic illnesses, will increase the risk of depression, but appears to be entirely separate from it.
We can add another item to a rather long list of ways to prove to your doctor that you’re not depressed.
The Real “Illness Multipliers”
Contrast that with what happened when the effects the comorbid illnesses (fibromyalgia, IBS, MCS) had on the symptom picture in ME/CFS were assessed. Only 18% of Natelson’s group did not have at least one other comorbid illness.
Having a comorbid illness significantly increased issues with physical functioning, body pain, symptom severity, symptom quantity, pain intensity, pain behavior and the ability to work. The symptom multiplier effect that occurred when two (or more) illnesses occurred together suggests some sort of biological synergy or some common biological pathways are affected in all these diseases.
Hopefully, similar studies will be done on FM and IBS and other allied diseases where somatization interpretations remain. Just this May, a study concluded that IBS is associated with increased symptoms and pain, somatization, depression, fibromyalgia, (and altered dietary fluids composition).
Even in FM, where the central sensitization findings can easily explain the increased pain in FM, a 2013 review asserted that FM can be classified as any number of psychological disorders including functional syndrome, somatoform pain disorder and somatization disorder. In 2017, defying all the biological research to date, German researchers argued that FM should be classified as a “somatic symptom disorder” (SSD); i.e. a mental disorder.
A Primary Care Doctor Poll
My experiences with my last two primary care doctors have been good. While neither knew much about ME/CFS or FM, both acknowledged that they were real, biological disorders. Both appeared to take them seriously. One was open to trying out some tests recommended by my ME/CFS expert. (I haven’t asked that of the other one yet.)
The Primary Care Doctor poll seeks to learn what your recent experience with your primary care doctor (not your specialist) has been. If you’ve seen your primary care doctor for ME/CFS in the past five years, please take the poll.
Primary Care Doctor Poll
What has been your experience with the primary care doctors you've seen over the past five years?
Conclusion
This study asked what effect having a comorbid disease or a mood disorder had on the symptoms a person with ME/CFS experiences. If having another disease increased a person’s ME/CFS symptoms, then that disease was assumed to be biologically connected in some way with ME/CFS. If it didn’t increase the symptoms associated with ME/CFS, then that disease was assumed not to be biologically connected to ME/CFS.
The study suggested that diseases such as FM, IBS and MCS are, in some way, biologically associated with ME/CFS: having one of them in addition to ME/CFS exacerbated the key ME/CFS symptoms (e.g. fatigue, pain, PEM, etc.) found in ME/CFS.
Mood disorders, on the other hand, do not appear to be closely biologically associated with ME/CFS: having a mood disorder in addition to ME/CFS only increased the symptoms associated with having a mood disorder – not the core symptoms of ME/CFS.
Contrary to attempts to label ME/CFS as a somaticization or other kind of psychiatric disorder over the years, it appears to have little in common with either. That suggests that the higher levels of mood disorders found in ME/CFS most likely simply reflect the difficulty associated with having an illness.
I was diagnosed officially finally by my Rheumatologist after years of searching for a doctor that believes it’s real. Ironically, the only doctors I have the don’t think my CFS symptoms are psychiatric are my psychiatrists (I had three different ones since 2005 because two have retired). They have all been consistent with saying my chronic fatigue symptoms are not consistent with my bipolar disorder or anxiety disorder and have been supportive of a CFS diagnosis. My last psychiatrist was actually fairly knowledgeable of CFS, even. It has been my psychiatrists who have prescribed me Armodafinil or previously Modafinil, which is the only treatment I receive for it.
I know I’m the oddball. My neurologist doesn’t treat or diagnose CFS, but when I showed him information about it, he stated that my symptoms are consistent with it. The least supportive has been my PCP of about 15 years. Fortunately, I recently was accepted by a new internist with an excellent reputation into his practice. I’m hoping for more progress with him.
It was a psychiatrist who put all the pieces together for me—and who began blood testing
you are lucky… my new PCP, my former female one retired, so he was just there; no one that I chose; no much in my city… thinks my extreme fatigue is due to more depression due to my father’s passing; but I don’t think it is…I have been very depressed in my life before but never with this much chronic fatigue and pain; I guess at this point I don’t care what they diagnose me as, just want it to go away.
Cort,
Interesting & relevant article but can I suggest one more possibility? i.e.-
– Doesn’t know about ME/CFS or really care about it…but is willing to treat your symptoms + takes you seriously.
I have been bedridden with M.E. for over 30 years. Approximately a year ago my trusted family doctor retired. My current G.P. is not open to discussing ME/ Chronic fatigue but oddly he has taken my symptoms very seriously. Unlike most of my past medical specialists + Drs., he investigates & pursues every symptom + has uncovered a # of underlying conditions that have contributed to the severity of my ME & severe M.C.S.
Strangely, the terms Chronic Fatigue/M.E. & M.S.C. are never part of the discussion. He has treat me for pain, respiratory failure,
hypothyroidism, meningioma, migraines etc, etc. But…..it feels like those words M.E./MCS/ Chronic fatigue are “swear words” to him & most doctors.
Weird or what?
Jim – I support your adding that category. I’d suggest the label for that category: “Good caring doctor.” Related to that, I think those of us with ME/CFS can tend to attribute any symptom we have to that condition. A good caring doctor will also continue to rule out and be attentive to any other diagnoses which may arise and be present at the same time as ME/CFS.
Yes, I strongly agree we need this category included.
As the selections were worded, I could not select
any of them.
I think this is more common than you may think. Some doctors don’t believe CFS is a legitimate disease but don’t necessarily think it’s somatic. They think something else is going on. Something is physically wrong that has been overlooked, and they try to figure out what it really is, versus using a “wastebasket” diagnosis that they consider a non diagnosis. In a way they are right – diagnosing a person with a disease that isn’t taken seriously, has no cure or treatment, and no research funding to speak of, seems like a last resort to me. If a doctor can find medical problems that are taken seriously and have treatment options and are covered by insurance, I can’t blame them for treating as many of those as they can before naming what’s left CFS – because that’s when neurologists and other specialists who should be interested will, instead, refuse to see the patient. Or, if you get in, roll their eyes, ask if you were molested as a child, and suggest cognitive behavior therapy. I kid you not.
I would also vote on that one. My PCP of 7 + years did not want to touch me w a ten foot pole, took “do no harm” to the point of neglect but if another Dr (like ME specialist) was involved & advising, my PCP would order anything suggested, she would cooperate fully as long as some other Doc was calling the shots.
Thanks – excellent idea. I’ll bet most doctors fit into that category!
Dear Cort,
I had contacted you some time ago concerning 18 years of ME/CFS that was later diagnosed as D-Lactic acidosis in 2017.
I thought that you may be interested because I was also diagnosed with Somatization disorder in 2001.
I fell ill in 1999 and was diagnosed with Somatization disorder two years later. I have made an application to the EU Court of Human Rights concerning the diagnosis of Somatization disorder in my complaint below, because the parameters for diagnosis stand as a Human Rights abuse;
Excerpts from my EU Human Rights Complaint below;
My application to the European Court of Human Rights concerns 18 years of abuse of my Human Rights that started in 2001 (two years after I became ill in 1999); when I was misdiagnosed with a psychological illness (Somatization) after a two year delay in diagnosis of illness which has recently been related in causation to D-Lactic acidosis that was delayed in diagnosis until 2017, because of inherent discrimination caused by the Somatization diagnosis that was placed prejudicially in my records and NHS summery documents including A&E and my ‘Significant Medical History’ to cause further stigmatization, because Somatization has influenced all treating Doctors and Services including A&E.
I cannot obtain a fair or impartial investigation from the NHS or Ombudsman; I am still unwell and this has caused three years of fighting for investigation.
I need to take my Human Rights complaint concerning Somatization disorder diagnosis and other Human Rights abuse to the European Court of Human Rights before it is too late. The Tory Government according to Liberty plan to stop fundamental Human Rights after Brexit. I have only one chance to make an appeal to the court of Human Rights. Please read my reasons below; because the NHS Trust has tried to cover up that I was diagnosed with Somatization or that it was placed in my most influential summery documents, which they are stating they now cannot find in my records as though it does not exist, so that it cannot be realized; and due to a number of replies from the Ombudsman I suspect collusion.
I now believe that the psychological diagnosis of ‘Somatization disorder’ stands as a Human Rights abuse in its own right, because it is unreasonable and unethical; because the parameters for diagnosis of Somatization by a Psychiatrist is based upon a lack of evidence or clinical diagnosis within 2 years; which means that a number of illnesses including MS, Bechet’s disease, Systemic Lupus and D-Lactic acidosis that take on average over two years to diagnose would be negatively and prejudicially influenced by such a psychological diagnosis as Somatization; which will cause further delay in obtaining the correct diagnosis and will only add to the stress and psychological trauma of patients with such a mis-diagnosis, which happened to me when I was left with traumatic symptoms and pain after the Somatization diagnosis acted to cause me long term discrimination, because it became my diagnosis for all of my systemic symptoms and illness caused by infection and D-Lactic acidosis since 2001.
‘Somatization disorder’ was placed in my clinical record and a number of summery documents for all Doctors to see as a warning that my symptoms were psychological and I was frequently dismissed without investigation or refused
attendance; and I have had to make a number of complaints to the Parliamentary and Health Service Ombudsman which all relate to the Somatization diagnosis causing discrimination, which has caused Doctors to dismiss my illness and not to attend during exacerbations of D-Lactic acidosis which can cause fatality and has caused me frequent illness including breathing difficulty like suffocation, drunk like confusion, abdominal and systemic pain, muscle weakness, tachyarrhythms and systemic neurological symptoms; which were dismissed by Doctors in A&E as psychological and Somatization caused them not to make requested Blood Gas investigations, even after a number of Doctors who had got to know me had made statements that my symptoms were in fact not Somatic from 2002 (just a year after Somatization diagnosis). I cannot afford a solicitor because the issues have become more complex due to the dishonesty of the NHS replies to my Hospital Complaints. I need urgent help because the abuse has continued from the NHS Chief Executive who have dishonestly tried to cover up the Somatization diagnosis as though it has never happened and the Ombudsman have refused to investigate any of the issues concerning Somatization; and after so many years of continued abuse is causing me further depression and making me unwell. I feel that I can no longer live under such conditions in the UK. I cannot endure any further abuse.
I have tried to reasonably make complaints to my local NHS Trust and Health Service Ombudsman for the past 3 years, but the Ombudsman has closed my case based on the dishonesty of a number of NHS Complaint Replies; for which I have only recently found evidence of misrepresentation, dishonesty and hiding information to prevent it being realized. I also cannot afford a Solicitor because the delay in diagnosis has caused me debt because I have been too unwell to work as a Sculptor; and the simple complaint about the delay in diagnosis of D-Lactic acidosis and misdiagnois of Somatization, has now become abnormally complicated due to the dishonesty employed by the NHS stop my information being realized.
I believe that the Ombudsman was complicit in leaving the Somatization diagnosis active in 2005 to cause discrimination and further delay in my diagnosis for another 12 years, because they had not taken the evidence into account of real illness in 2005 and evidence from Doctors that I was not Somatizing. They have covered this up by not investigating my Hospital Complaints concerning Somatization in 2017, after I finally gained a diagnosis. I did not feel that I would be treated and differently by the Ombudsman until I had gained a full diagnosis, but made 4 Complaints which I had asked to be seen together as evidence of the effects of Somatization, but the Ombudsman refused and investigated them separately, without investigating the effects of the Somatization diagnosis.
Prior to the Somatization diagnosis I had been diagnosed with ME. which has similar neurological symptoms to D-Lactic acidosis and it is possible that a Subset of ME is caused by D-Lactic acidosis; and I had also asked for investigation of D-Lactic acidosis on behalf of many other patients with ME in the UK, but had been refused. I had also evidenced to the Ombudsman Somatization as a Human Rights abuse. .
Paul Smith.
Cort, I’m truly sorry but you have suffered continuously for 30 years. I have had remissions and relapses. Ironically, it was an ER visit in the late 1980s we’re in urologist diagnosed my fibromyalgia. Chronic fatigue was never taken seriously or was just part of the fibromyalgia syndrome. There is such an overlap between the two conditions that for at least two decades they were lumped together. I never really bothered with doctors, rather I did my research and took thousands of supplements over a 20 year period. It seems the real abscess begin in the late fall Anna remissions begin sometime in the early summer. I have not found traditional medicine to be very helpful other than dealing with the diagnosis. I also have Hashimoto’s thyroiditis and a host of other autoimmune conditions for which I akso treat myself.
I want to suggest one more possibility too because none of the above fits my PCP.
She knows M.E. is real, that her knowledge about it is limited, and that she can’t cure me. She knows that we (the sufferers) collect and share information about M.E. and which drugs that may help. She listens to learn and prescribes the drugs I think may benefit me. My health is my responsibility – I’m in charge. She’s my humble assistant. She’s never pulled the ‘mental-card’ on me; instead, she’s complimented me for being ‘positive, optimistic and still happy/smiling after all I’ve been through.’ I feel very well taken care of and close to my PCP. She’s given me her e-mail address and phone number and comes to see me when needed. Sometimes she sends me a text asking how I’m doing. She stopped charging me years ago. She’s extraordinary. Don’t you agree?
Hi kirsti w-
May I ask where u live,
Who is your doctor?
Thx-w
When I first got sick, I went to several doctors, who all did the same two blood tests and declared there was nothing physically wrong with me. They then offered me psych referrals. I diagnosed myself, figured out treatment myself (from books), and finally had the diagnosis confirmed when Stanford accepted me into their CFS/ME studies. I haven’t been to a doctor in over a decade.
that is probably the best thing to happen; get accepted into an established medical research place; I want to donate my body to a medical center after I die; I don’t know if it will help after my bodily systems are no longer working but I would like to know, even if just in spirit what the hell was wrong with me and what was causing it.
‘the high levels of mood disorders found in ME/CFS most likely simply reflect the difficulty associated with having an illness.’
Yes, Thank You!
I can see how things get in a big muddle, if a person with ME/CFS is not listened to very carefully.
I also think that not being believed has been extremely detrimental to my wellbeing.
I don’t want to be two faced as I do think my doctor is genuinely trying to help me with what he thinks is anxiety and depression – but I believe the anxiety and depression I experience, is as a result of having had years of truly terrifying and ever changing incapacitating symptoms.
For me, not being believed is actually soul destroying. It’s also dangerous as I can have very bad reactions to food/medications.
I have come to the decision that there is no point continuing to try and convince my doctor that my symptoms are ‘real’ and not a fabrication of my mind.
I know they’re real and I’m doing a pretty good job of managing them and my life, which isn’t easy. Through this I have realised that I’m more resilient than I am given credit for.
me, I have a trauma from being mistreated and all what I have went throughand lost in 3 decades of severe illness and 10 years in isolation. my caregiver died 10 years ago.
but when I was still a bit better, I went with him laying in the car, siting in whealchear, not far from here to me/cfs psychiatrist. I told him I have a trauma from cfs etc. the only thing he did was looking in his papers and say nothing.
they can even not imagine! yes, here for excample childhoodtrauma but i have no childhoodtrauma. I have a trauma from cfs!
Hi Konijn, I just wrote you a long reply and as I scrolled up to check it, before I sent it, I hit the cancel reply and it all went!
Ok, so a condensed version is that, fairly obviously, I believe you are not receiving the care that you need. I now work part time as a home caregiver. What you seem to need is a thorough assessment of your needs by a range of professionals – a well trained doctor, occupational therapist, community nurse and have regular visits from home caregivers, like me.
To not receive this kind of assistance, seems extremely neglectful.
Also I believe that not being listened to and heard is psychologically harmful like being excluded when being bullied.
I have continually experienced this and the sarcasm, eye rolling, huffing and puffing etc. I find this so distressing and humiliating and I am actually so angry it’s off the scale. However I’ve decided to not get mad but instead to try and get even.
This whole fiasco is going to hit the public arena in the not too distant future and hopefully doctor’s, who have treated their patients very poorly, will have to account for their actions. I look forward to that…
You are in Belgium if I remember correctly from previous posts, aren’t you? So am I. Yes, we don’t get access to the services that Tracey Anne mentioned here, because while the illness is officially recognised, there are no doctors, no clinics, no support system whatsoever in place to help us patients. We struggle to get basic benefits, let alone extra disability payments or access to services reserved for people with disabilities. We are truly on our own here. Doctors refuse to treat us if their blood tests don’t show anything they are familiar with. Occupational therapists are only trained in helping people convalesce after illness or injury, but they don’t understand the limitations of ME/CFS. And we can’t get home help because we can’t get evaluated for disability.
Yes, I suspect that is the case Conny B. My point is that this is what is needed at a very basic level.
I believe people with ME/CFS are so marginalised, we aren’t even acknowledged as even existing.
I live in Ireland and am currently in the process of trying to find out what the official protocol is here, as it doesn’t appear to exist here either.
I’m fed up of my daily experience being denied and my health issues being categorised as mental health issues, when there is a physiological illness occurring.
So, I understand how you could read my reply to Konijn in this way – I am just trying to make the point that Konijn’s basic needs are spectacularly not being met.
Dear Tracey Anne,. Please don’t give up on finding a knowledgeable doctor. I know something of what you are going through, it took many years for me to find a doctor that got it and I remember the terrible trauma of being so very ill and frightened and just being dismissed. When I found my current doctor and she listened to me and examined me and spent over an hour with me – I burst into years, I just cried like a baby. If any doctor ever should have concluded that I was a nut case it should be her, but she had apparently seen it before. Such a wave of relief and validation and hope, at last, it came out as tears and sobs. And she is not primarily an ME expert, she is an internist specializing in AIDS and Lyme disease. These are usually the ones who understand ME as well. there are a lot of similarities. Here’s what I know now. There are hundreds or thousands of studies documenting the severe physiological dysfunction in this disease. There are multiple tests that show severe abnormalities. It is well known that standard lab work doesnt show anything. That doesn’t mean the patient should be dismissed. That means more tests are needed. Different tests. And there is a great deal of published information detailing those tests and what to look for in the results, because, for example, a heart monitor report showing averages as is typical will look normal. A doctor has to evaluate the actual raw data – the waves – to see the severe dysfunction. Not many doctors are willing to spend the time. But there is absolutely no excuse for dismissing the patient as a mental case. That is if orange and amounts to malpractice. We need to start suing them. Or at least get up and walk out and refuse to pay due to INCOMPETENCE. If they are not up to treating the challenging cases they need to refer to a doctor who is.
Hang in there. We are hanging in there with you!
I meant to say “that is willful ignorance and amounts to malpractice” lol.
Yes I agree with you Kate. My view is that the medical profession is part of the Health Service and that we, the patients, should be seen as partners in our own health decisions.
I think the relationship between doctors and their patients has largely gone wrong. Doctor’s assume too much power and patients feel disempowered – I don’t this is helpful for either person.
As a fellow sufferer, I can absolutely identify with what you have written. I was in the ER last week and not for the first time. I refer to it as soul destroying. Like you, I also have taken my health into my own hands. It is far less stressful and I have better control over managing my condition with greater success. I am tired of arguing with the medical profession.
Hi, any psychological problems that I developed are due to being misdiagnosed with Somatization and being left terrified and traumatized with a real illness, D-Lactic acidosis, which has virtually identical symptoms as ME. I am still suffering from Post Traumatic Stress and Depression due to an 18 year delay in diagnosis due to being mislabeled.
I have realized after being diagnosed with D-Lactic acidosis that there are probably other forms of Bacterial Overgrowth including IBS that can cause, and are related to Chronic Fatigue.
According to statistics many patients who have ME, Chronic Fatigue and Fibromyalgia also have Gastrointestinal problems and it is likely that these may be due to disturbances of Gut Flora, either Bacterial Overgrowth or reductions of Bacteria necessary to digest food and produce things like the neurotransmitter Seratonin which acts in the central nervous system, and as a hormone in the periphery.
In terms of mood, 90% of our Seratonin is produced in the Gut and any abnormalities in the production will affect out mood. Seratonin also influences motility.
According to Sheedy et al. who have made investigations into CFS after finding that a Subset of Chronic Fatigue patients (meaning ME), had increased D-Lactic producing Bacteria leading to ”This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications”.
There is a possibility that we have caused these disturbances through the use of antibiotics and other medications. Antibiotics alone can select for Bacterial Overgrowth through Resistance and decimation of other symbiotic Bacterial Colonies.
There has been a phase shift in understanding many forms of illness as being caused by disturbances of Gut Flora; and early trials of Fecal Transplant show promise as both MS and ME has been reversed using Fecal Transplantation.
Paul.
My Stanford PCP didn’t even know about Stanford’s Chronic Fatigue Clinic! I had to access it through my pain management specialist there. I have ‘double PCP’s’ because I am seen by three institutions, plus a whole host of specialists. Both my PCP’s are clueless about how to deal with ME/CFS and I’m beginning to think that Stanford’s Clinic is too.
Mostly I do research myself (a big thank yous to you Cort, for keeping us abreast of what is happening in research-land!!!). When I find some treatment with possibilities, I approach one of the specialists (depending) to ask for help. It’s mostly like I’m telling them what to do for me, not them telling me.
I find it interesting that also having Ehlers-Danlos, many of the EDSers with hyper-POTS get told that they have a psychological disorder. Never mind that hyper-POTS makes the autonomic system dysfunction which often creates inappropriate surges of adrenaline. This makes patients feel like they have some kind of anxiety disorder, and many therapists are all too willing to agree.
So this isn’t just a ME/CFS problem. It’s very common that gastroenterologists blame symptoms on emotions as well. Because feeling bad (depressed) is common while struggling with troublesome symptoms, I think that psychiatric diagnoses are a just a dumping ground when the cause cannot be clearly understood or explained.
Thanks for writing this perspective Cort!
My experience has been similar. I’m lucky that my primary care doctor and the three specialists I see regularly (rheumatologist, neurologist and pulmonologist – I also have sarcoidosis) are emotionally supportive and certainly seem to believe that ME/CFS is a physical illness but none have actually helped me over the last 4 years outside of symptomatic treatments that I have found myself and proactively requested (eg Mestinon).
It’s much better than not being believed but it’s frustrating to have used all my energy over the years going through a huge number of tests when I could’ve just asked for a painkiller, muscle relaxant and Mestinon from day dot and have used those few precious hours I have each week to spend time with friends and family.
I don’t want to suggest to anyone that they shouldn’t pursue treatment but for me, I’m stopping all of these specialist visits – just keeping up my primary / family physician – and focusing instead on regaining some quality of life which for me, is time with family instead of laboratories. Just until the research catches up with need and we have more medical options.
Thank you wise advice that I will follow..Has Mestinon help you since you been on it? With all meds. I usually get the side effects so I going to take a look at it ..??
Hi Nancy B.,
I’m very interested in your comment re: EDS and hyper-pots. I have POTS (I don’t know about the “hyper” part, or how that is diagnosed), and Joint Hypermobility Spectrum Disorder. I’ve been thinking a lot recently that the role that adrenaline appears to play in my system has made it that much harder to advocate/push to be treated as physically over psychologically ill. (Because I cannot deny: I feel stressed! But I think it’s mostly from the adrenaline and POTS.)
Do you happen to have any good sources of information on this confusing “crossover” experience? (Just thought it sounded like you might.)
Thanks!
Martha
@ MarthaLauren,
O.K., first a general overview of all forms of dysautonomia in this most excellent site; http://www.dinet.org. (You may find much of what you are seeking in this one site alone. It is also interesting to note how many of the symptoms of certain types of dysautonomia are similar to ME/CFS symptoms. I think that is why Drs. like Lucinda Bateman are so interested in it).
Now specifically about (hyper)-POTS being misappropriated as an anxiety disorder, here is a secondary article which discusses that; https://edser.weebly.com/notes-from-2013-conference/dr-alan-g-pocinki-pseudo-psychiatric-symptoms-in-ehlers-danlos-syndrome
Dr. Pocinki has put forth his ideas mostly in EDS Conference lectures. I could not find “Pseudo-Psychiatric Symptoms in Ehlers-Danlos Syndrome.” Maybe you can track it down if you go to the main site, http://www.ehlers-danlos.com, and look up past conferences.
There is also a lecture on http://www.chronicpainpartners.com by another M.D. on this topic. See the bottom left corner for a list of all the lectures.
Probably the majority of doctors STILL think these adrenalin surges are anxiety disorders, especially if you go on a Google quest, (similar to thinking ME/CFS is psychiatric).
Hope that is helpful. Doctors are not always right!
Man, I get the same reaction to this that I get to every new scientific study that comes out confirming the human role in climate change. Certainly, more convincing evidence is helpful to make the case that ME/CFS is a biological condition, but it’s depressing that we are still stuck here, trying to convince the skeptics, when we could be marshaling more resources towards finding and implementing solutions. By the time everybody is on board, we’ll all be dead.
It also seems ironic that in the post-Prozac era doctors treat psychological diseases as “chemical”, ie, biological — ie, there’s a pill for that — but ME/CFS still gets relegated to the realm of psycho-somatic, ie, you’re making this happen with your thoughts and maybe you should try CBT or meditation.
Sadly, hammering another name in that coffin seems to have no effect. The psycho-social model of ME has so many nails its coffin it looks like a porcupine, but it’s like the undead; I think it will take a stake through the heart to lay it to rest.
This isn’t the first time the CDC has authored a study which showed that a psychiatric diagnosis was not related to developing ME. The 2006 Dubbo prospective study of people with EBV, Ross River virus and a couple of others, showed that psychological symptoms had no bearing on who went on to develop ME. The only predictor was how severe their infection was. In the CDC press conference announcing the results of those studies, they said that it should once and for lay to rest the idea that ME is psycogenic. But obviously, it didn’t. Nor has the overwhelming body of evidence produced in the 13 years since then.
I don’t know what it will take to drive a stake through the heart of that malarkey: a biomarker? A cure? Whatever it takes, it’s long overdue.
Ha! Ha! That is so well said!
“The psycho-social model of ME has so many nails its coffin it looks like a porcupine, but it’s like the undead; I think it will take a stake through the heart to lay it to rest.”
And you are so right. I think this study will help but it will take more studies and time. A biological biomarker would, one would hope, do the trick pretty quickly or better yet an FDA approved treatment (altho even after 3 FDA approved drugs the somaticizers are still trying to elbow FM into their camp. That’s incredible to me given all the science.)
Thanks for the laugh, though.
Dear Chris B,
I think you are on to something. We need to start a movement, ask every ME patient, when faced with willfully ignorant medical personnel, to respond with incredulous look and ask “I suppose you don’t acknowledge climate change, either, then? There are not enough facts, studies, data, or evidence to ever convince you of what’s right in front of your face, because you refuse to even glance at the evidence so many experts worked for so long to provide?”. Then we need to start posting their names publicly, and file formal complaints with licensing agencies and the AMA and our Insurance companies! as purported physicians who deny the existence of a severe and disabling disease identified and acknowledged by the CDC, the IOM, the WHO, and the SS Administration, among many others, including the best universities in this country. Ask agencies to investigate and our insurance companies to take them off their preferred provider status, and to deny payment for a visit where we were mistreated and improperly evaluated because of ignorance and irrational bias.
Yes Kate and Chris, I agree with you. I am just so fed up of passively accepting being dismissed but it’s so difficult to be heard.
When I read the article, a while ago, on Dr Chhedda, I just felt like crying. To be truly listened to, by another person/group of people, with compassion can be hugely beneficial.
To be dismissed and not be heard by other people is also very powerful in a negative way.
I spent years training as a counsellor/psychotherapist – which was both enlightening and damaging. As part of the ‘training’ we were to be psychologically broken down in the 3rd year.
They didn’t put that in the course brochure. When I challenged them, the psychotherapist bullied me into submission. This actually triggered my illness 12 years ago.
I have spent the last 12 years attempting to fight back and deal with this illness in all its ever changing manifestations. I think I’m finally getting somewhere with the psychotherapists and I’ve managed to make tremendous improvements in my health.
In the last few weeks I contacted a local politician to help me raise awareness of ME/CFS within the Health Service and the Government. Her assistant emailed me to say the politician was going to raise the issue in parliament.
So we’ll see what actually happens. Anyway Kate and Chris, you’re people after my own heart…
I also had a nasty flu, whilst being extremely stressed and a few weeks later something fundamentally changed in me physiologically, which has then continually changed over the years.
Dr. Bateman says that in her experience the researchers get it about ME/CFS quickly – it’s the doctors who tend to be the hard cases and behind the times.
She is Spot On about that, too Cort! My hope lies in the Researchers/Dr.s to lead the way as well as Center of Excellent impletemented Worldwide..Many thanks to All as well as OMF which has been a Godsend to us!
Marching Onwards Solve ME..??and All with Hope
30 years now of ME and I was scoffed at and called lazy by friends, I heard from other friends they were laughing behind my back. Only 2 years ago a friend who is a guidance counsellor said my condition was psychosomatic even though the window and windscreen of my side of his car had fogged up from my body sweats. He said “yeah that’s psychosomatic too”.
Then he had a motorcycle accident and was hospitalised and deconditioned, he started exercising and got his health back (something I’ve tried many many times) yet he still argued that exercise was the answer and I was merely deconditioned. He also sent me a Lightening Process article, which I finally threw a fit and flooded him with the latest biological science emails. He now actually understands which is good. But it was hard enough suffering this vile disease and having a friend who was an ME/CFS denier. That hurt.
Also 2 years ago saw a Locum Doctor who when I asked if he acknowledged ME/CFS was biological, he gently shook his head inferring “no” (sigh!)
But the worst are nurses, they think they know more than doctors and are utterly appalling in their treatment of ME/CFS patients, they have the mentally that we are hypochondriacs and need to ’get up and go’ to recover. Try showing them any information and they refuse to read it. They are truly the worst in the medical profession and shouldn’t be allowed near ME/CFS patients.
I’ve seen psychiatrists and psychologists and over the years I’ve noticed they have improved, or they just don’t let on about their own opinion. but like I said before nurses haven’t improved one bit, truly awful people.
Interesting reading and comments. All I have been doing for the last twenty years is trying to stay alive and keep myself as well as I can by self-care and micro managed by specialists when I run into complications. I have medical tests to be done in hospital by ct-scan later on this month and my only fear is that I will have a reaction to something and end up being mismanaged, maltreated and dead… I am putting together written instructions for the hospital staff and look out if they do not pay attention to my multiple chemical sensitivities and other past reactions that I have had. Keep tuned for my progress.
Good luck!
what I noticed (severe pem, verry ill) is again the small number of study patients.
and I ask myself, is there with this study (unger in it) now comming millions and millions more money to really research these illnessen and me/cfs? Are there going to be made adaptive homes with adaptive care for the verry severelly ill ones who are alone?
and yes, I have read more reactions how bad stanford is doing on me/cfs allthough ron davis wants to make there an center of excellence. so how does it come?
here in my country, we are even 1000 years behind.
Nothing is coming as long as the people in power in government health agencies don’t want it to come. They don’t. They never did. That’s why it hasn’t.
Unfortunately destroying lives does not count as a war crime for purposes of a government official becoming subject to indictment at the Hague.
yes, that is true. but even this research paper with dr unger (thought she is at the cdc or am I wrong?) has again only 60+ patients in it.
I am to ill to see dramatic change if they can not even pay for a larger study like for example a few 100 or a 1000 patients as in other deseases. then I ask myself, do they really mean it to really say it is an illness or is it just something to keep us “calm” or how do you say it in english. So like, see, we are doing something… 🙁 If it where for excample 500 or 1000 patients, that would influence the goverments maybe, would be meaningfull, maybe also for the rest of the world. but this?
there was allready the jama publication and 2 earlyer reserches cort mentioned. And what did happen? what changed really? not the funding for research or so I believe. Or am I wro,ng? not the urgent needed addapted homes for severelly ill people who are alone and so on.
offcource, everything is better then nothing but it is not a study that I would dare to show to my homephysician and also not to someone I know who did breastcancer research. He got daily hundreds of research papers of minimal 1000 patients each. So my conclusion is still, breastcancer moves and gets money. me/cfs and the other illnesses not. and I still have the feeling, they do not really mean it with me/cfs, etc
And those psychiatrist will laugh, at least here with a sample size of 60+ patients. All these decades, they had much more money and much larger researchgroups to laugh this paper just away.
If I am not wrong, the naviaux study was one of the largest studys. maybe a few others I can not remember. but I thought at least bigger then 300 patients. But if I remember or not, I believe we can count the larger studys on one hand.
so sad, so cruel.
and my country does zero like many others. yes I read that they are working now allready for years on a biomarker(s) for burn out. we,I am so much more ill, wish I had only a burn out and not 3 decades life trowing away and 99-98% bedridden and even still declining. 25% is homebound or bedridden, many still declining. 7 times more suicide. the co-morbiditys and deaths. they simply do not care and they do not mean it seriously with this paper.
Hi Konjin, there have been some larger studies done lately. Lipkin and Montoya have done some big ones and it looks like the NIH research center studies will be quite large. Other than that I don’t know. In order to get big research studies done researchers have to get big NIH grants and in order to do that they have to actually for them. Unfortunately, very few are.
Every Dr in the Veterans Administration I’ve seen has denied my likely Lyme and co-infections, and some have acknowledged my symptoms resemble CFS but not one of them has offered any treatment. In other words, it’s in your head, go away. Thank God I have a LLMD who diagnosed me with CFS & FM per SS Disability standards but the judge denied it all because he doesn’t believe it exists.
are painful swollen lymph nodes all in ones head? how about fevers?
can go on forever with more symptoms but just a couple that others will understand to start.
Interesting reading the comments as well. All I have been doing for the last twenty years is trying to stay alive and keep myself as well as I can by self-care and when I feel like I am on my last leg of this race I go to my GP! He is the one that Dx me with Fibro. and since recent issues has came up I have searched on my own for answers and help! Recently brought up to GP of my thoughts of having ME/CFS too! Sent to Neuro. Consultant told him Dr. wanted a EEG and why (Siezure,Epi. possible) to rule out .I mention ME/CFS to Neuro.Dr.and asked him what he knew about it..His response was all people with that are in the hospital under care and one of his suggest for me is to go talk to pyscho. Dr.
Told him he was wrong about both..It took all the energy I had after having to deal waiting for so long and due thier office staff sending me to the wrong dr. at first, yes two visit, two different dr.s Max. time 15 mins. both Drs…so I am totally done, disgusted and disappointed ..I have no more energy nor time to waste let alone money to throw away ..
Waiting for the tickle down effect ( praying for flood gates to open wide) for all of us and for the Center of Excellent Hoping to see it before I die..Keeping All the Hope ?
Oh and GP when I mentioned my thought of ME/CFS too asked what is that? (clueless)
And I was told that I need to stop reading (red flag) but I will help you figure this out..???
The medical schools don’t teach M.E. If I’m wrong and they do teach M.E., it has happened recently.
Lora – re Mestinon, I was sicker all summer due to Mestinon, and am still recovering from it (stopped taking it in August). It made me dizzy, more tired, severe GI symptoms, very low energy. The balance issue and GI pain were the most severe “side effects.” I had no positive effect at all. At my ME/CFS doctor’s urging, I titred up very slowly with tiny doses. I noticed the first strong adverse effect when I increased from one tiny dose a day to two tiny doses a day. If you’re considering taking it, my advice is to be very very careful. I wish I had stopped when I had the first strong adverse reaction, instead of figuring the side effects would go away. They didn’t.
Thank you for your response?…another not going there for me as I am dealing with all the adverse reactions you mention now without any added meds. But I will continue to move forward and hope and pray for better days ahead for all of us..Stay strong All..?
Lora, I too have been mainly focussed on staying alive, particularly the last 3 years or so.
I have actually figured many current issues (things change) and am making steady progress.
Luckily I have a terrible memory, so forget sometimes how ill I have been. I am potentially very unwell and that is always lurking somewhere in the background but I prefer to look ahead and focus on the things I can do now.
I haven’t tried Mestinon but some people take Huperzine A instead – they are both cholinesterase inhibitors and the hup A has no side effects. I take it and like it.
A couple of GPs tried this with me, the psychiatrist said, bless him, “she is stressed with illness, she is not mentally unwell.”
This disease was re-named Chronic Fatigue Syndrome in 1987-88 by officials of NIH and the CDC for the express purpose of saving Lake Tahoe’s resort economy by convincing people the 300 person outbreak documented was no big deal. The outbreak had been in fact identified as Myalgic Encephalomyelitis but, it was clear then as experiments have shown since, that is name that makes people take seriously.
“Fatigue” needs to be taken out of the discussion. The truth is we lack energy, we collapse readily, we suffer sudden onsets of muscle fatiguability and we have Post-exertion neuro-immune disorder. Even Dr. Komaroff, involved in the initial naming, has stated that he would not choose the CFS name again.
If a car runs out of gas do we say it is “fatigued?” If a car stops running because its filtering is hopelessly clogged do we say it has “malaise?”
It’s bad enough we are being killed. Why also the cold-blooded murder of the English tongue?
“The authors pointed out that anytime a physician sees a patient with unexplained fatigue, their default diagnosis is likely to be a psychiatric illness.” Ok, so that would mean that many with ME/CFS would likely get or have gotten at some point a psychiatric diagnosis.
“The participants then filled out a long list of questionnaires which provided data on their symptoms. (The questionnaires included fatigue, symptom, functionality and mood disorder questionnaires). “
“Mood disorders were indeed commonly found: 36% of the participants had a current psychiatric diagnosis, 32% had a past psychiatric diagnosis and 32% never had a psychiatric diagnosis.”
Does this mean that the participants were classified as having mood disorders because of their answers on the questionnaire about mood disorders, if so, how can 32% have had a past psychiatric diagnosis which would mean they reported that past diagnosis to the researchers? Perhaps a question about past diagnosis was on the questionnaire?
So if people with ME/CFS are likely to get a psychiatric diagnosis, they how many of these “likely” psychiatric diagnosed participants are ones that don’t belong in the category of actually having now or previously a psychiatric diagnosis vs having received past or present a psychiatric diagnosis because they actually have or had a psychiatric illness?
“the higher levels of mood disorders found in ME/CFS most likely simply reflect the difficulty associated with having an illness.” I’m wondering if the higher levels of mood disorders in this study are associated with the admitted default diagnosis of psychiatric illness a person with ME/CFS is likely to be given whether they have an actual psychiatric illness or not.
I wondered about that too
I wondered that as well. I can only assume that you must be right and that a substantial number of those diagnoses were not warranted.
I was told by an old GP that he thought I was depressed. He sent me to a psychologist who quickly told me I know what a depressed person is like and you are not depressed!
You need to change the line “both acknowledged that they were real diseases”.
I realise that it isn’t intentional but, in the context of the article, you are implying that mental health disorders are not real diseases but they very much are.
Thanks for pointing that out. I will change it.
Could you provide a link to the study please, Cort?
Many thanks for the article, much appreciated as always.
🙂 https://www.tandfonline.com/doi/abs/10.1080/07853890.2019.1683601?journalCode=iann20
In my opinion the only very serious chronic disease that is even less funded then ME is RDS.
RDS is generally unknown by the medical profession or the general public. It however causes massive distress and severe disabilities with millions of patients worldwide.
RDS stands for Reality Denial Syndrome. While it is rampant throughout the medical profession and widespread among the general public, there isn’t even good quality research on the number of medical professionals affected. The diseases also lacks good diagnostic criteria. Estimates range from 10% up to 90% of medicals effected according to varies resources using different criteria.
While RDS is believed to be a psychosomatic disorder, with affected individuals transforming their mental inability to either relate with or understand reality into a stubborn form of denying the latest high quality medical research as a coping strategy, it affects their patients by increasing their rates of disability, poverty and general number and severity of their symptoms.
This psychosomatic disorder is believed to be best treated by life long education of medical professionals and providing with the latest medical research information. However this treatment has generally been little effective when supplied over the last few decades. Urgent research is needed to improve the prognosis of affected patients suffering from RDS. Improved treatment of RDS is expected to have a strong knock on effect on the patients of these medical professionals as well.
Brilliant Dejurgen, I love it!
Wonderful! Love it!
You have definitely put your finger on a hole in the relevant diagnostic manuals. Thank you!! I’ve been wondering what everyone around me has!
Funny enough, I actually do feel better, reading your description. It makes it clear that “reality” is very different only as a result of whoever is “in charge” of the conversation.
A delusional disorder… That is one very serious disease! I hope they can find treatment.
Amen to that, Cort!?
“While the Canadian Consensus Criteria (CCC) or International Consensus Criteria (ICC) identify a sicker and more functionally impaired group of patients, it’s possible their longer list of symptom criteria may also pluck out patients with more psychiatric diagnoses.)” I disagree. If the IC primer is applied properly the ICC should be much better able to define the discrete disease ME amongst populations..and I’d argue that when that is done properly there is actually a remarkably low prevalence of mood disorder in that population… probably lower than found in this study (if those who are in my orbit are anything to go by).
It’s strange but true but it’s complicated as well. I put a link to a study by Lenny Jason who’s results suggested just that and get this – when I was reading Simon Wessely’s tome – on 20th Century illnesses – he referred to that very idea – that the more symptoms one has the more likely one is to be diagnosed with a psychiatric illness.
However Jason also showed that the later definitions were also more specific and sensitive than the Fukuda.
My impression was that the best definition was I think the Ramsay definition or a more recent formulation of it which was shorter but quite precise.
Thank you Cort. None of this research is going to matter to the Doctors if the CDC is not putting it in front of them, that is when these type polls won’t be necessary. We don’t have to convince ourselves and after all of the evidence there is, why are we still having to deal with the bias from the ignorance of the Doctors? 100% of this doubt could be remedied in an instant. Just my 2 cent.
@Nancy B,
Thank you for all of those links. That’s super helpful!
I couldn’t attach my comment back to you on the original thread, but I very much appreciate your response.
(So hopefully you’ll see this here!!)
@MarthaLauren,
Saw it and appreciate the thank you!
I may not be able to do many of the things I want to do in life, but as long as a few of my brain cells are working, I love to share and try to help others with my ‘addiction’ to on-line research.
Kindest thoughts your way!
Thanks Nancy! ??
Hi MarthLauren,
You should be able to attach your comment to the thread by going back up to the reply button under the original comment.
Even if there’s lots of comments underneath, your new one will go to the bottom. It took me ages to figure that out ☺️
Thank you for the tip TraceyAnne! Yes, I’d always thought the “reply” button stopped appearing after a few comments on a thread maybe to intentionally keep the deviations from the main conversation to a minimum. But now that you say it, I see that the original reply button remains. Thank you!!
Hi all,
I’ve just been reading through everyone’s comments here. They leave me with the same feeling I often get…the hope of change…and desperation for immediate change and justice…and heartbreak.
I often especially notice comments from people like konijn because I know that exact feeling. No one is coming…
(Sorry, Cort, this is a little off topic…but…)
…I often find myself wondering…is there anything we might really be able to DO for one another, in the meantime..? (Even just some small group of us…)
I’ve had this condition for 19 years, and I’ve spent the vast majority of my time reading about it, and carefully running experiments on myself. I keep up with the mainstream research (but only through HR). Mostly I read about improving health, neurological health, etc., from the perspective of functional, integrative, naturopathic medicine. Because while they (extremely frustratingly) as a group don’t put any weight on a diagnosis like CFS (and often any other), they are at least hyper-focused on how to improve your health, generally, and on how to help your system/body/person recover from any/most conditions. (So, that’s where I’ve found the most immediate help for myself.)
But I’m also fully aware that many countries have very little to no alternative medicine/paradigm presence at all. And, frankly, it’s taken me this whole time to figure out how to incorporate their suggestions safely for myself. (I don’t think, for the most part, functional practitioners are at all familiar with the extreme sensitivity to treatments that is often a part of this condition, and definitely is for me.)
So I often find myself wondering if other people out there (particularly those in countries with zero service) would benefit from being part of some group, where we shared the best information we’d gathered about improving our health? (Everything that can be done now, and until/unless the powers at be really change their approach and priority to serve this population much better.)
For instance, right now I’m working my way through the Energy Blueprint Program. This was a new find for me, and I’m sure many people would question how much that information has to do with severe CFS. But I like it because so many of the techniques are really safe, and natural. For instance, loads of information about how to get your circadian rhythm in line (and all the far-teaching effects that has on all sorts of systems..immune system, brain, etc.).
These kinds of things are clearly not enough alone, but additively, over the years I’ve gone from completely house/floor bound, to far more normally functional, by piecing together advice like this (and on the gut, autoimmunity, ANS dysfunction, etc.). So, I could be sharing this kind information with people who are interested, and who don’t have the brain power to read complex books, or money to join special programs. (I didn’t have either myself for years, and the only reason I do now is because most of my brain function has recovered, and because I have a partner who fully supports me. He always has, but now he’s worked his way “up the ladder”.)
And I know I could certainly use a group of people who were all working on the same thing together: doing our darnedest to get well, despite being left out of our various healthcare systems. (And often our families, etc.) I have my partner, but I have received no help/support/encouragement from the people in my family, and I lost all of my friends very early on, when I was completely housebound and disabled.
(So, I too, am in a sense, still very alone with much of this.)
And now the holidays are coming again…which I feel like are just the worst for people who have been “abandoned” in any way.
Would there be interest in some kind of group like this? (If so I could figure out how to get it going. Maybe Cort would let me write a blog to describe this idea more fully..?) Or, alternatively, do any of you know of existing groups like this?
I’m not thinking just a support group, but a small international group with the core mission: share the best of what we know, support each other, and leave no one behind! I have a fantasy that some day we could all even meet somewhere on the planet and know we got there because of each other. (But I am a romantic. And maybe this whole idea is too “romantic” for reality.) But I just wanted to throw it out there…just in case someone’s eyes light up at the idea. ?
If there’s no interest here, I’m meanwhile plotting that I could propose the same basic idea to my local (Portland OR) POTS group. (So no one needs to feel bad for me if this idea does not fit in here, or into CFS well! It may not, because we may be too diverse a group.)
(Cort, please move this comment to some other place/thread, if more appropriate. I apologize: I don’t know the more interactive parts of your site well.)
If anyone wants to email me directly on this idea: marthalauren@gmail.com
Best wishes to you all. ☺️
Martha
Much of what you write Martha; I can relate to.
What about the forums here on this site? I do get overloaded with information sometimes and can’t keep up. However I find what other people write very useful, especially when they expand and add in things they might think are irrelevant.
I have been unwell for 12 years and have gone through different phases, unfortunately becoming worse a few years ago but I’ve managed to scramble back up to a fairly consistent and seemingly robust level of functioning at present.
I kind of know what I’ve been doing and have thought about putting together what I believe has helped me.
However I would liken my brain speed to broadband and it’s not super fast fibre optic! But my brain is working good enough.
What I thought might be interesting would be to give a background history of our health/ life events etc, what we think contributed to our illness and what approaches interventions have helped and then where we are now…
I have thought about steadily working my way through all the articles and comments on HR because I think there will be so many gems tucked away in them. Haven’t started yet, it’s still just a thought ☺️
Hi again Tracey Anne. ☺️ Yes, I realized later I should have said (but my post was already so long): I absolutely love this site! (Fortunately Cort already knows this of me.) I read most of the articles, and all the follow up comments whenever I can.
And it may be that the forums would work well for what I was thinking…
But it’s more that I’ve been trying to figure out recently how to end up with a smaller network of people who are all at least kind of doing the same things. Not the same treatments, exactly, but roughly working away at this beast in generally the same way. (And, yes, as you say, where we have enough background on each other that we kind of “know” one another…or at least one another’s healing plans.)
There’s a great FB forum for this new program that I’m doing…but it has 3.6K members! And now there’s all this research coming out about how social connection is vitally important to the brain, and particularly for recovering proper ANS function. But, I’m kind of assuming that it has to be “real” connection: in other words, actually knowing people. (I realize, that’s a crazy proposal in this modern world. ?)
But also, I just feel that I am quite changed by my experiences. And I think I relate best to people who have had similar ones.
So it may be that it makes the most sense that I float this idea to my local POTS group. I just thought I’d give it go here too…just in case anyone had been thinking the exact same thing. ☺️☺️ (Because you never know.)
I don’t want to distract from the main topic any further. So anyone interested should feel free to shoot me an email.
Thanks for your response Tracey Anne. I’m glad to hear that you are working your way in the right direction! (Up!)
I would love a blog like this Martha. I will get in touch. Thanks for mentioning the energy blueprint by the way. It’s on my list to check out.
Yeah, I have been pleasantly surprised by the EBP program. I’d never heard of it until just recently. It’s main “set up” is to heal mitochondrial function and turn down the Cell Danger Response. (Both at once: as the two are apparently both the result of the same dysfunction. According to the science that forms the basis of this program, anyway.) Definitely worth checking out the first free videos, anyway, to see if it “strikes a chord”!
Hi Cort,
Please see my comments at the end of this thread…
Best,
Nancy B.
Hi,
I recently found out about Bateman Horne Center and subscribed on Utube to watch videoes that are being posted and they have been a Godsend? Her videoes to me..I was looking how can I exercise and I have realized at her suggestion breaking things up into small pieces.. Exercise like walking or just anything…5 mins. On, 5- mins. or more rest.. go at my own pace grad.
Everything you mentioned I just viewed the panel of people like us thier Stratge. and Coping..even one just recently posted about the holidays coming up which I have not viewed yet..I hope this helps as it is worth a look see..??
Hi Lora,
Thanks for this tip. I was completely unaware of this resource, so I will definitely check it out!
Thank you!
Somatic symptom disorder (used to be somatization- no longer used in the DSM)
is characterized by an extreme focus on physical symptoms — such as pain or fatigue — that causes major emotional distress and problems functioning. You may or may not have another diagnosed medical condition associated with these symptoms, but your reaction to the symptoms is not normal.
This means that a person could have a physically based illness but their symptoms don’t fit with the illness identifiers. The assumption is that people with “medically unexplained” illness/symptoms develop “faulty illness beliefs”. These are exaggerations or “catastrophizations”. Where there is no clear biomarker it is easy to assume that the patient is exaggerating. Symptom variation and “extreme” reactions especially in MCS is a red flag to the doctor. For example some people with MCS take to living in their car or never go to a shopping precinct/mall or wear masks when they do so. Some with ME/CFS will not get their children (with ME/CFS) vaccinated for fear it will exacerbate their symptoms. School attendance is often very low in juvenile ME/CFS and the doctor may not certify their illness so that educational attendance at school is demanded or causes demerits. However as already pointed out most GPs have had more recent training in how to treat a person with “medically unexplained” symptoms – treat the symptoms! However this can leada to issues because people with ME, FM and MCS can react badly to drugs such as “antidepressants” (used as analgesics) such as duloxetine or nortriptyline and are then frustrated by the patients responses.
For the patient the issue of trust and “being believed” becomes paramount so it is important for the GP not to expose a disbelief.
The point I am making is that this re-definition of somatization to somatic symptom disorder moves the problem from being a mentally created symptom to a mentally exaggerated symptom. A subtle difference.
Many GPs also try to handle psychological disorders themselves rather than referring on. Eg, A person with ME/CFS could have a significant memory problem (common enough) which the doctor thinks of as “dissociative amnesia”. I recall a person saying to me that she collapsed in the doctor’s rooms, then claiming that this was evidence that her illness was “real”. In fact this was no evidence at all because the doctor would assume she was suffering from a dissociative disorder. (a type of somatic symptom disorder). In another case a man with ME complained about a problem of continually biting the inside of his cheeks or biting his tongue. I explained this by suggesting that muscle fatigue lay behind this and for him to try to find out if any events may bring on a bout of this. However his doctor said that “it was normal for people to do this” and chose to ignore the high frequency that he did this. In this case rather than treat the symptom the doctor chooses to minimize or “normalize” it. Later the man did identify that it was mainly brought on when he was more fatigued and when he was not attending to his eating. People with ME are known to have a problems with split attention tasks. (like talking while eating)
Someone earlier questioned how could a fever be interpreted as a mentally induced symptom. Well yes a fever could be. I remember an experiment we were required to do as a student. To use bio-feedback to raise our body temperature. In fact over half the class could do this, a few quite substantially and one person suffered extreme vertigo as well. So yes some people can clearly induce “signs” as well as symptoms. The point here is that it is possible for some clinicians to continually interpret symptoms and some “signs” as somatic symptom disorder. When we have a clear and simple lab testable biomarker – these interpretations will disappear.
Yes, this is my problem – I can have such varied and sometimes extreme reactions to seemingly innocuous foods/medications/situations that I know I sound as though I am catastrophising and exaggerating and making things up.
My current doctor did say to me once ‘I don’t think we see you when you’re very bad’. True, I don’t go to them then because I’m in my own with my son, no family around, they don’t believe me anyway, so I just go and lie down. I think there’s a bit of common sense lacking here.
The not ‘being believed’ bit, is like denying my very existence – it’s phenomenally detrimental.
I also think the medical profession like the counselling and psychotherapy profession can be similar to cults.
I am currently rehabilitating myself from years in the counselling/psychotherapy cult. It is impossible to argue with them, they just say it’s all ‘in your head!’
Thank you for laying out the rational for Somatic Symptom Disorder, which I do believe in having studied, trained, and worked in mental health. However, during my graduate studies in Clinical Psychology, I was disgusted by how hypotheses easily entered textbooks based on a few dubious studies designed to be self-fulfilling prophecies (yes, easy to accomplish in Psychology based on study design with so few replications).
What I have always found interesting about medicine is that doctors are not trained in Psychology, yet readily diagnose somatoform disorders rather than digging deeper. I know Jen Brea addressed this issue in her Ted Talk by stating that doctors should be able to just say, “I don’t know.” When will dumping a mental health diagnosis on a patient not be incorporated in medical training as a serious ethical violation? A doctor is not trained to provide such a diagnosis, a patient should be referred to a mental health professional for such a diagnosis.
I believe governments, for decades, have taken too much heed in under-developed/-explored psychological research. Psychological concepts/ideas can be an interesting things that provide some framework for understanding problems, however, psychology is not a “hard” science and there is little scientific “truth” to be found in psychology. We have researchers that are contemplating ideas and testing them in an effort to get published and tenure, but are not actually pursuing truth. In many ways, after I entered my graduate program, I lamented not pursuing neuroscience.
I know it goes against the hierarchies established in society, but while degrees and institutional certifications can cloak opinions with credibility, they do not actually substantiate scientific fact. The DSM should not automatically be a source reference. However, because the DSM is published by the American Psychiatric Association (a lobby group), it has become a standard for medical, legal, and political purposes.
Hi Ian,
I find your comments interesting because it seems you’ve been on “the inside” of this field/thinking. So, do you think/know that all of that really is going on in some sector of the general population…that people’s unnatural “focus” is actually causing and/or exaggerating symptoms?
Or, do you think this notion is mostly used to give an explanation for everything, including pain etc., that is so far just not understood?
Or, do you think/know that both things are going on, simultaneously, in the general population. (That some people truly are suffering psychosomatic illness, pain, fatigue…AND that somatization also gets used as “excuse” by doctors/psychologists/researchers not to look into and/or learn about other physiological causes of those conditions).
If the latter (if both are going on)…where does this leave both the patient and the practitioner populations who are trying to understand “reality”? Short of having clear biological markers to “prove” everything, and every sensation, possible (pain, fatigue, gi disturbance, dizziness, chemical reaction, etc.)…which will presumably not happen for a very long time (where everything that can actually affect a person’s tissues can be proven objectively)…what are the other ways to separate between somatization and simply undiagnosed or not-yet-understood illness/pain?
Does it all just come down to the opinion of a clinician?
But if a whole generation of clinicians have been trained to believe that everything that doesn’t show up on a modern lab, yet, is psychological in some way…isn’t that quite a dangerous tradition? Shouldn’t they be very rigorously asking themselves…how do we know?
Are they asking themselves this? Is the field regularly asking itself this? Or, no?
And, in that same vein, how do modern clinicians explain that new ways to diagnose illness are being made all the time?…That MS was believed to be “hysterical paralysis” before the MRI, etc. (All of those changes in understanding over time. Whoops. Guess you really were weak…were in pain.)
I can never understand, given the repeat history of this kind of thing happening (new information, new understanding), how can people with this psychological perspective, be so “sure” that what they are seeing simply isn’t understood yet, and not that it is the result of mental illness/exaggeration…?
Sorry, those are complex questions to ask and answer to in a thread. Just curious on your perspective. (Should it happen to fit.)
Thanks!
Prevalance of mood disorder among CFS patients is no surprise. Brain inflammation has been implicated in mental problems like depression or even paranoid schizophrenia (which Bruce Campbell reported as one of his CFS symptoms). So that’s likely another symptom along with whole slew of neurological problems. People seeing pyschosomatic disorder in CFS is just another group mistaking symptoms for causes. There have been too many of those in the field of CFS research.
CFS patients being more likely to suffer mood disorder prior to developing CFS is an interesting one. Perhaps CFS patients are more prone to brain inflammation even before they developed CFS. Still, the mood disorder would be a predisposing factor in that case, along with allegies and childhood stress, rather than the cause.
I had very extreme feelings of dark desperation and agitation when my brain became significantly inflamed over the last few years – after I had a flu/cough and a temperature of 41°. Certain foods triggered my smouldering brain.
Thankfully I knew it was a reaction and not a permanent state and that I just needed to stop eating whatever it was that upset my brain and hang on until it passed.
You r survey didn’t have an option for my wonderful primary care doctor. She doesn’t know ANYTHING about ME/CFS, but she believes it is a real, biological illness and she lets me do all kinds of non-traditional tests and treatments for it. I bring her ideas from my ME/CFS specialist and my own research. She is the best.
I would much rather work with an open-minded doctor who doesn’t know anything about ME/CFS than one who thinks they know about it.
I would have to say that is my Gp, too. He believes me and cares as just recently saw first hand how bad I was in front of him and that is why he sent me to a Spec. but I don’t think he knows about ME/CFS so I can fill out the poll now ..?
I meant I could not..Stop Reading comment confused me but that is not good advice that I am willing to follow ..?
Is ME/CFS a “physical” disease? That is, a disease independent of cognition?
In short, no symptoms of any disease can be independent of cognition. So, is it possible for someone to exaggerate their symptoms? Of course it is! Why would someone exaggerate their symptoms? -No one is taking them seriously. This is very different from saying that the illness is the result of faulty illness beliefs. I believe most PCPs have moved past this assumption but many still believe that the illness is still somehow very mixed up with psychological stress and psychological stress is a “mental cause”.
We MUST follow current research. Current research tells us that ME/CFS is an immune disorder, a disorder of homeostasis. The most definitive biochemical studies have clearly implicated TRPM3 (a calcium ion channel) in the disorder and in the varied symptoms. Other ion-channels are probably involved, especially those linked to the variants of TRPM3. Once this ion channel is dysfunctional the brain becomes involved, both via the biochemistry of the ion-channels and via cognition (emotion/mood).
What causes this set of ion-channels to become dysfunctional? Possibilities are what we already suspect: #1 response to an infection, #2 trauma, #3 toxic attack/load There may be others but these are suspected and logical given the nature of our immune defense and signaling systems. We are fairly certain that (most cases of ) fibromyalgia are caused by an IGg mediated (auto-immune) attack on nociceptors, many of which are TRPM3 based and which are modified in the dorsal root ganglia, the modulators of pain signals. FM is not ME but the cross-over is uncanny.
Few if any PCPs follow the latest immunological research on any disease, never mind ME/CFS. Immunology is exceedingly complex and takes a long time and a lot of money to repeat studies. The journal of Frontiers in Immunology, to which I subscribe has only six research articles published on ME/CFS in the past five years, here they are: If you want full references I can supply them.
Cellular Immune Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Naltrexone Restores Impaired Transient Receptor Potential Melastatin 3 Ion Channel Function in Natural Killer Cells From Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients
Antibodies to Human Herpesviruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients
Unperturbed Cytotoxic Lymphocyte Phenotype and Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients
Infection Elicited Autoimmunity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Explanatory Model
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a hyper-regulated immune system driven by an interplay between regulatory T cells and chronic human herpesvirus infections
Hi Ian,
Thank you for your insights. (I think your comment was in response to my questions to you.)
Certainly complex stuff for us to all try to sort through to get care: the only way to substantiate our conditions is through science, but the people treating us are not even following the science that has been established.
No wonder we often end up instinctually sensing that we’re trapped between “a rock and a hard place”, even if many of us do not understand the inner workings in these fields, and therefore exactly why that may be. (I think what you describe may be why.)
Best wishes,
Martha
Lots of debate here. I think sometimes people with ME/CFS get a psychological Dx is because insurance requires some sort of ICD–and if a doctor isn’t well educated in the finer points of our issue, then a somatic diagnosis will fit the bill. Also, genetics, I suspect, will play some sort of role in all of this… and I also suspect that the environment (perhaps the effects of man made toxins) might as well.
But I don’t want to debate this right now.
I want to second MarthaLauren’s idea of having some sort of way to share what is working for each of us, or at the very least, what has been tried and is or is not working.
Cort, as much as I absolutely love your reporting and the following comments, I find it very awkward to go back and forth to older posts to be able to read new comments which are posted later. That can become quite a few posts to keep checking on. I don’t know if there is some sort of way it can be a continuous thread–at least in specific topic areas.
I know I am proposing something which could easily overwhelm you–but maybe someone else has a good idea here. Since I have Ehlers-Danlos I often post and read comments on the many Inspire threads dealing with EDS. Unfortunately, even though there is a fibromyalgia group and a rheumatological (mostly arthritis types) on Inspire, when I posted a ME/CFS ‘roll call’ there wasn’t anybody who posted back. It struck me that CFS folks are a very specific and likely isolated sub-group which doesn’t get much attention (as if I have to say it!).
So, this is my request; to at least have some sort of group posting of what helps people cope, whether it is medications, pacing or something else.
Thanks again, Cort!!!
Gosh the format here of a few words per line incapacitates my neck hands wrist elbow shoulder as I have to keep it rolling. Why is it like that? Can I see it another way? This is not functional. Perhaps it is just me? Nancy, I also have ehlers danlos syndrome. What helps me cope is …………..nothing because they wont treat me as there is a movement to eliminate the very sick in U.S. as a lifetime of devastating REAL conditions. I cannot get pain treatment.
Thank you for the article! Too bad some clever law firm wouldn’t choose to be on the side of right and file a class action lawsuit against the creators of the DSM-5 somaticization diagnoses and how they are a gimme to the insurance industry and their wealthy attorneys to paint patients (many of whom have multiple medical diagnoses) as mentally ill or liars. I can only imagine the billions of dollars in disability and PI judgments patients have lost from this. After a car accident with severe whiplash, spinal and other musculoskeletal injuries deteriorated further over a few years as arthritis, nerve symptoms, and trigger/tender points set in. I had complications from treatments, including joint injections, medications, and epidurals worsened everything and caused new injuries–including myofascial pain syndrome, fibromyalgia, and CFS. My well-paid career that i loved is over, my financial life and future are burning down around me and I have had to deal with the humiliation and distress of continually jumping through hoops for five disability administrators and the insurance company attorneys. Its bad enough that most doctors don’t understand these conditions but NONE of these entities do either so it is much easier for them to dump you in the psychiatric bucket to discredit you. I made the mistake of going to see a neuropsychologist about cognitive changes and she sabotaged me by assigning the SSD diagnosis to me–in spite of all my medical records and obvious misery. Now I could lose even more thanks to her “naive” and uninformed diagnosis. When is THIS going to end?