Brian Walitt and the Psychosomaticism of Fibromyalgia: Another Look

Marcie Zinn

New Member
Walitt's logic is pedantic and simplistic and he is angry. How is it that he got hired? Who thought he was competent? Just for the record, all of these words are synonymous: psychosomatic, somatization, hypochondriasis, psychogenic, and they all strongly imply malingering. He can use new words all he wants but he is ridiculing sick people and getting away with it, using government funds to do it, and we are paying for it. This is where our tax dollars are going.

It is really unfortunate that this guy will have so much influence now, being at NIH. We should not have to endure the type of punishment he is dishing out, especially since he is using only the part of the literature that fits his own biases. There is a lot of very powerful evidence against what he is saying, if he would take a minute to look at studies of other types of cognitive impairment. First, the brain always compensates for weakness in one system. A weak system produces compensation in another system, but the overall efficiency of the brain is reduced. This is all part of neural efficiency studies. In a system as complex as the human brain, disease produces failures in those portions of the circuits that are necessary in order to fully comprehend, and make decisions based on many types of information that must be integrated. Then we also know that in a diseased brain, the information flow is slower, meaning that much information is just lost. I cannot go into this much here, but when the brain is slowed down, it is very difficult to form new memories (learn). These things do not show up on neuropsychological tests. This type of knowledge is, however, easily obtainable and part of many research studies.The brain just does it naturally. The fix for this? Assess premorbid functioning, and assess compensatory mechanisms through connectivity analysis! For premorbid functioning, just assess what the person was like before illness, and yes, that can be done. So, why would a researcher overlook these well-known, important facts? Why would he "oops," forget?

How is it that people with CFS/ME can drive? That is also easy and the knowledge is accessible to even first year people in research. The answer is fluctuation of symptoms. All he has to do is look at the encephalitis literature or look at any cognitive impairment literature, and there it is--the prediction that sick people with any form of encephalitis, meningitis, cognitive impairment, even brain tumors, have symptoms that wax and wane. Valerie Harper has cancer in her meninges, and her symptoms wax and wane. Does that mean the cancer is cured? Is it just a perception of hers? Again, in diseased brains the numerous processes which produce efficiency are greatly reduced, but they vary around an average of some sort, so the patient has "good days," and "lousey days." Any person with cognitive impairment for any reason will tell you that.

The point here is that these "facts" are easily explainable and the answers are already in the literature. Walitt should read Luria and some of the neuropsychologists who had so little to work with that they became incredibly adept at reading their patients. They write about these problems profusely--how someone who is ill one day appears fine the next day, about how people compensate and how to spot it in an interview. They wrote about two people never presenting the same way, even with the same diagnosis.

These problems cannot be explained by diagnoses of exclusion, or diagnosis made in ignorance. I believe we should all call out individuals who put forth this bad science and hold them to much higher standards, which include all testing viewpoints, not just the ones which support their own personal biases.
 

Katherine Autry

Active Member
He shouldn't have to wait for this. He can simply read the IOM and P2P reports which, through extensive literature review, reaffirmed the fact that ME is not a somatoform illness.
It is a reasonable request from us, the patient community, and from the real "clinical expert" community, to require a response from Brian Wallitt addressing his understanding of the findings in those reports, point by point, and his agreement or disagreement with the evidence provided. If he disagrees with any particular conclusion or piece of evidence, it is reasonable for him to explain why, based on science, rather than his personal pseudo-spiritual beliefs.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
"Many PWME were intellectually high-functioning before they became ill. They could lose a lot of cognitive function and still test within normal range. Nevertheless, they are going to notice the loss of function."

I also have Essential Tremor (ET) along with fibro and see a neurologist (Movement Disorder Specialist "wasn't trained in fibromyalgia"...aargh). Anyway, she provides a basic cognitive test as cognitive dysfunction can be found with it too. I scored 27/30, completely normal. My response was "But I would have gotten those 3 right before!!!". She said her more intelligent patients were more stressed. Maybe because we're talking about a 10% drop in cognition, that everyday I experience that loss in function emotionally because I know what I used to be capable of, and am scared of what future tests may show. ET or fibro, I know my cognitive ability has changed.
Good point....When I've found something that makes temporarily better - my mind is so much clearer - I can see connections I didn't see before - I can plan out things I didn't even think of before.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It is a reasonable request from us, the patient community, and from the real "clinical expert" community, to require a response from Brian Wallitt addressing his understanding of the findings in those reports, point by point, and his agreement or disagreement with the evidence provided. If he disagrees with any particular conclusion or piece of evidence, it is reasonable for him to explain why, based on science, rather than his personal pseudo-spiritual beliefs.
At the advocacy meeting he was politely asked to explain himself. He wasn't asked to go into detail and he didn't got into detail. He simply said that he did not believe ME/CFS was all in one's head, or that, if I can remember correctly that it was the product of our subconscious or that one could push through. He said that it was a biological illness and that he was committed to finding better treatments for patients.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Could you ease my mind and show me where they say all the patients are coming from our experts? I remember hearing that too but the description on the website says only most patients and we don't know what clinics. In a 40 person study that could mean 15 patients from elsewhere. Still seeing no oversight by any of our experts.

We mostly talk about Walitt but there are another 5 guys on the team with similar views. Lipkin is in there but he's not a clinician. I'm not liking this at all. What are your thoughts on the other NIH "clinical experts" ? How can we get a clean break from the past when they would all have to disavow their own theories to do so?

Most patients will be recruited from well-established ME/CFS clinics that are being supported by the CDC in the Multi-site Clinical Assessment of CFS study (http://www.cdc.gov/cfs/programs/clinical-assessment/).

Diagnostic validity will be reviewed as well by an executive committee, which include experts such as Dr. Elizabeth Unger from the CDC and Dr. W. Ian Lipkin from Columbia University
I agree that it says "most". I don't know why it doesn't say all and I wish it did! The ME/CFS clinics include Dr. Klimas, Dr. Peterson, Dr. Bateman I believe, Dr. Natelson I think, Dr. Kogelnik and I believe Dr. Levine...

I wish we had our own experts in there. I don't know much about the other ones but I don't recognize any of them and I've heard there are problems with some of them. My guess is that they are intramural NIH people and that was what they had but I don't know.
 

Laurie P

Member
Please read my 1 comment (it's listed under Laurie) at the bottom of the page
http://www.cortjohnson.org/blog/2016/03/10/nih-long-term-effort-chronic-fatigue-syndrome/

Please read my 2 comments and watch the 2 hour NIH video with Brian Walitt
http://www.cortjohnson.org/blog/2016/02/24/the-psychosomatic-researcher-in-the-nihs-big-chronic-fatigue-syndrome-mecfs-study/

I'm not well enough to read today but skimming through here it still didn't look like people were watching the video. PLEASE WATCH IT. THANK YOU.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Please read my 1 comment (it's listed under Laurie) at the bottom of the page
http://www.cortjohnson.org/blog/2016/03/10/nih-long-term-effort-chronic-fatigue-syndrome/

Please read my 2 comments and watch the 2 hour NIH video with Brian Walitt
http://www.cortjohnson.org/blog/2016/02/24/the-psychosomatic-researcher-in-the-nihs-big-chronic-fatigue-syndrome-mecfs-study/

I'm not well enough to read today but skimming through here it still didn't look like people were watching the video. PLEASE WATCH IT. THANK YOU.
:)...I still haven't see that Laurie...I will watch at least part of it...

Here's the video -
 

KweenPita

Active Member
The moment I hear PSYCHOSOMATIC I want to put a fork into someone's eyeball and say "Well, you got the psycho right". I am just not following this experts reasoning at all of the other experts. I have a didactic memory and can read a 400 page book in about 5 hours in a nice quiet, comfortable environment on a good pain day.

But what clinicians and experts fail to understand is that we are different day to day, pain to pain, season to season, stressor to stressor. If too much is going on around me, and I am stressing about some problems and then you begin to ask me to make decisions, I can't do it.

I am noted for being a decision maker and problem solved. But too much stimulus, and I can't do this, I can't think, can't process, form words, think what I want to say or the word for it. I think, we are the experts of us and we have our whole picture. It's not just one day. It's a lot of days. Not some blind men with an Elephant.

And again, researchers don't have a true cross section of a population according to ratio analysis without a sampling of 1500 participants. So how do these studies and experts become the absolute authority with these paltry numbers??????? How does NIH accept this?

There's lots of us out there, throw a rock up in a crowd 7 times and I bet you will hit someone with CFS/ME or FM at least twice. You'll know because they'll be the ones who knock the snot out of you for hitting with a rock. Not hard to find.

I refuse to accept anything these people say about me and my many, many, "they don't know what the eff we have or how to really help us" friends till they get down and dirty and do some real case studies with real numbers, not some fudging quotes and quotas to fit their model, because it sure as hell is not helping us, real people with real lives living this everyday.

Thanks Cort for bringing us this in depth information. It let's me know to the NIH, they really don't take us seriously, we don't deserve studies, just sticky notes of regurgitated sticky notes.
 
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IrisRV

Well-Known Member
He simply said that he did not believe ME/CFS was all in one's head, or that, if I can remember correctly that it was the product of our subconscious or that one could push through. He said that it was a biological illness and that he was committed to finding better treatments for patients
He could mean exactly what we would want him to mean by this. Unfortunately, the BPS school has used this same kind of language to weasel-word their position. "Yes, we believe you have a real illness. We believe your symptoms are real. We believe this is a biological illness. We are committed to finding better treatment for patients. All mental illnesses are real. You have real symptoms you are causing with your false beliefs, that is, they are psychosomatic. Many mental illnesses have biological abnormalites, so they are biological illnesses, ones that need psychotherapeutic approaches. Better treatment means better psychosocial strategies, not medications or other biomedical treatments"

It's hard to know what Walitt means exactly because he won't go into detail and uses fuzzy language. If he could clearly state his position without using the language used by psychosomatic illness proponents, I'd feel a lot better. I'm tired of having to guess what he really believes about ME/CFS.
 
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luelma

New Member
Walitt's logic is pedantic and simplistic and he is angry. How is it that he got hired? Who thought he was competent? Just for the record, all of these words are synonymous: psychosomatic, somatization, hypochondriasis, psychogenic, and they all strongly imply malingering. He can use new words all he wants but he is ridiculing sick people and getting away with it, using government funds to do it, and we are paying for it. This is where our tax dollars are going.

It is really unfortunate that this guy will have so much influence now, being at NIH. We should not have to endure the type of punishment he is dishing out, especially since he is using only the part of the literature that fits his own biases. There is a lot of very powerful evidence against what he is saying, if he would take a minute to look at studies of other types of cognitive impairment. First, the brain always compensates for weakness in one system. A weak system produces compensation in another system, but the overall efficiency of the brain is reduced. This is all part of neural efficiency studies. In a system as complex as the human brain, disease produces failures in those portions of the circuits that are necessary in order to fully comprehend, and make decisions based on many types of information that must be integrated. Then we also know that in a diseased brain, the information flow is slower, meaning that much information is just lost. I cannot go into this much here, but when the brain is slowed down, it is very difficult to form new memories (learn). These things do not show up on neuropsychological tests. This type of knowledge is, however, easily obtainable and part of many research studies.The brain just does it naturally. The fix for this? Assess premorbid functioning, and assess compensatory mechanisms through connectivity analysis! For premorbid functioning, just assess what the person was like before illness, and yes, that can be done. So, why would a researcher overlook these well-known, important facts? Why would he "oops," forget?

How is it that people with CFS/ME can drive? That is also easy and the knowledge is accessible to even first year people in research. The answer is fluctuation of symptoms. All he has to do is look at the encephalitis literature or look at any cognitive impairment literature, and there it is--the prediction that sick people with any form of encephalitis, meningitis, cognitive impairment, even brain tumors, have symptoms that wax and wane. Valerie Harper has cancer in her meninges, and her symptoms wax and wane. Does that mean the cancer is cured? Is it just a perception of hers? Again, in diseased brains the numerous processes which produce efficiency are greatly reduced, but they vary around an average of some sort, so the patient has "good days," and "lousey days." Any person with cognitive impairment for any reason will tell you that.

The point here is that these "facts" are easily explainable and the answers are already in the literature. Walitt should read Luria and some of the neuropsychologists who had so little to work with that they became incredibly adept at reading their patients. They write about these problems profusely--how someone who is ill one day appears fine the next day, about how people compensate and how to spot it in an interview. They wrote about two people never presenting the same way, even with the same diagnosis.

These problems cannot be explained by diagnoses of exclusion, or diagnosis made in ignorance. I believe we should all call out individuals who put forth this bad science and hold them to much higher standards, which include all testing viewpoints, not just the ones which support their own personal biases.
Marcie - just out of interest do you have a professional background in some sphere of medicine, or medical research? The reason I ask is because your very informed reply suggests as much (though I know there are legion sufferers/advocates who are simply very well-researched by dint of feeling so passionately about such a devastating and traduced illness.)

I also ask because I try to keep my own notes taken from articles and informed commenters and I always record the author and their professional or patient position. The hope is that some of this material might be used do if I improve enough to write articles again for the mainstream press. I was a journalist by profession pre-illness.

I am now much more ill than even this article suggests but I did have a piece recently published on ME/CFS in the Daily Telegraph - the focus was the urgent need for, and strength gained from, compassion in longterm severe and life-destroying illness FYI:- it can be read here http://goo.gl/1cPf5J
 

KME

Member
I’m noticing a worrying trend recently which I wasn’t aware of before – some rheumatologists who have clinical +/- research experience +/- expertise in fibromyalgia are happy to assume that their clinical impressions and research findings of fibromyalgia simply transfer onto ME/CFS. Dr Walitt has done extensive research in fibromyalgia, but not ME/CFS, yet according to these notes of the NIH community call 8th March, he considers himself to specialise in ME/CFS and fibromyalgia. http://www.meaction.net/wp-content/uploads/2015/04/NIH-community-call-3-8-16.pdf

While in his papers on fibromyalgia he often mentions chronic fatigue syndrome in passing as another somatoform disorder like fibromyalgia, the references listed do not demonstrate evidence of familiarity with the literature in ME/CFS. In the 2015 chemo-brain paper http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/, Wang, Walitt et al 2015 cite just two studies on chronic fatigue syndrome; one is Holmes’ paper, the other is one by Ojon. The Holmes et al one is the 1988 paper from which the name chronic fatigue syndrome originated – not our finest hour. (http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf) Here’s a quote from Ocon’s paper which will give you an idea of where Ocon is coming from:
“these studies suggest that the perception of fatigue in CFS is a mental experience of physical fatigue following exercise, or potentially any a stressful stimulus, even if no such physical exhaustion occurs. In addition to the cognitive component, this mental experience is part of the subjective “brain fog” that patients with CFS describe. This perception may be exaggerated, continual, and prolonged, despite true muscle exhaustion not occurring.” Ojon further claims “Meta-analyses demonstrate that cognitive behavioral therapy and graded exercise therapy effectively treat CFS in many individuals”.
(Full Ocon paper at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3617392/ )

Dr Walitt has done research on exercise in fibromyalgia and theoretically could be considered expert enough by the NIH to be involved in this area of the NIH study:

On Dr Walitt’s NIH page there is a reference to his most recent study on exercise and fibromyalgia:
“He was most recently awarded the American College of Rheumatology Investigator Award for his study entitled “The effects of exercise therapy on brain function in fibromyalgia.”” (see https://nccih.nih.gov/research/intramural/laboratory-clinical-investigations-branch/staff/walittb) I haven’t been able to track this down, perhaps it has been presented but not yet published.

For a 2011 study by Walitt on the effect of exercise on memory in fibromyalgia see here http://explore.georgetown.edu/news/?ID=60787 and here http://consumer.healthday.com/fitness-information-14/misc-health-news-265/study-suggests-exercise-may-help-memory-of-fibromyalgia-patients-658872.html

So I do think Dr Walitt is likely to be a lot more involved than we would like. I think he will be writing papers alongside everyone else. But I also have faith in other doctors. I can’t imagine Dr Avi Nath taking too kindly to any suggestion that his post-Ebola patients are somatising.

It is very, very easy to get null findings when you don’t understand an illness, even with the best of intentions. I agree with other commenters that real ME/CFS expertise is lacking in the core NIH group. If appropriate collaboration with ME/CFS experts happens, we could get an excellent study.
 

luelma

New Member
Walitt's logic is pedantic and simplistic and he is angry. How is it that he got hired? Who thought he was competent? Just for the record, all of these words are synonymous: psychosomatic, somatization, hypochondriasis, psychogenic, and they all strongly imply malingering. He can use new words all he wants but he is ridiculing sick people and getting away with it, using government funds to do it, and we are paying for it. This is where our tax dollars are going.

It is really unfortunate that this guy will have so much influence now, being at NIH. We should not have to endure the type of punishment he is dishing out, especially since he is using only the part of the literature that fits his own biases. There is a lot of very powerful evidence against what he is saying, if he would take a minute to look at studies of other types of cognitive impairment. First, the brain always compensates for weakness in one system. A weak system produces compensation in another system, but the overall efficiency of the brain is reduced. This is all part of neural efficiency studies. In a system as complex as the human brain, disease produces failures in those portions of the circuits that are necessary in order to fully comprehend, and make decisions based on many types of information that must be integrated. Then we also know that in a diseased brain, the information flow is slower, meaning that much information is just lost. I cannot go into this much here, but when the brain is slowed down, it is very difficult to form new memories (learn). These things do not show up on neuropsychological tests. This type of knowledge is, however, easily obtainable and part of many research studies.The brain just does it naturally. The fix for this? Assess premorbid functioning, and assess compensatory mechanisms through connectivity analysis! For premorbid functioning, just assess what the person was like before illness, and yes, that can be done. So, why would a researcher overlook these well-known, important facts? Why would he "oops," forget?

How is it that people with CFS/ME can drive? That is also easy and the knowledge is accessible to even first year people in research. The answer is fluctuation of symptoms. All he has to do is look at the encephalitis literature or look at any cognitive impairment literature, and there it is--the prediction that sick people with any form of encephalitis, meningitis, cognitive impairment, even brain tumors, have symptoms that wax and wane. Valerie Harper has cancer in her meninges, and her symptoms wax and wane. Does that mean the cancer is cured? Is it just a perception of hers? Again, in diseased brains the numerous processes which produce efficiency are greatly reduced, but they vary around an average of some sort, so the patient has "good days," and "lousey days." Any person with cognitive impairment for any reason will tell you that.

The point here is that these "facts" are easily explainable and the answers are already in the literature. Walitt should read Luria and some of the neuropsychologists who had so little to work with that they became incredibly adept at reading their patients. They write about these problems profusely--how someone who is ill one day appears fine the next day, about how people compensate and how to spot it in an interview. They wrote about two people never presenting the same way, even with the same diagnosis.

These problems cannot be explained by diagnoses of exclusion, or diagnosis made in ignorance. I believe we should all call out individuals who put forth this bad science and hold them to much higher standards, which include all testing viewpoints, not just the ones which support their own personal biases.
Marcie - just out of interest do you have a professional background in some sphere of medicine, or medical research? The reason I ask is because your very informed reply suggests as much (though I know there are legion sufferers/advocates who are simply very well-researched by dint of feeling so passionately about such a devastating and traduced illness.)

I also ask because I try to keep my own notes taken from articles and informed commenters and I always record the author and their professional or patient position. The hope is that some of this material might be used do if I improve enough to write articles again for the mainstream press. I was a journalist by profession pre-illness.

I am now much more ill than even this article suggests but I did have a piece recently published on ME/CFS in the Daily Telegraph - the focus was the urgent need for, and strength gained from, compassion in longterm severe and life-destroying illness FYI:- it can be read here http://goo.gl/1cPf5J
 

Gijs

Active Member
''Walitt's logic is pedantic and simplistic and he is angry. How is it that he got hired? Who thought he was competent? Just for the record, all of these words are synonymous: psychosomatic, somatization, hypochondriasis, psychogenic, and they all strongly imply malingering. He can use new words all he wants but he is ridiculing sick people and getting away with it, using government funds to do it, and we are paying for it. This is where our tax dollars are going(....)''

Well said! Psychosomatic is real, like anxiety or depression, they're also biological etc... Walitt is a joker playing with words :) Cort is al little naive, i think.
 

KME

Member
When you read a few of Dr Walitt’s articles, not just on fibromyalgia, but also rheumatoid arthritis, cancer etc, you start seeing that in his view, the following symptoms are always suspicious for somatisation: pain, fatigue, cognitive dysfunction, gut issues. Some people are allowed have some pain, some fatigue, but not too much – if they get too sore or too fatigued, then they’re somatising. See his paper on rheumatoid arthritis “Polysymptomatic distress in patients with rheumatoid arthritis: understanding disproportionate response and its spectrum” http://onlinelibrary.wiley.com/doi/10.1002/acr.22300/epdf

The people who are allowed have some pain, some fatigue, seem to be those with conditions that medicine understands a bit more, and can “measure”, to a greater or lesser extent. So I imagine that Dr Walitt would be OK with a person with systemic lupus reporting some pain, fatigue, cognitive dysfunction, as long as they have some nice clear antibody findings on blood testing. There’s a lot of symptom overlap between ME/CFS and a number of conditions that have measurable findings, e.g. hypothyroidism, many autoimmune diseases, but for some reason Dr Walitt and many others are happy to go with an assumption of guilt (of ME/CFS being somatoform) until proven innocent (although it’s unclear what Dr Walitt would see as evidence of ME/CFS not being somatoform). I’m not sure how Walitt reconciles himself with people who clinically have rheumatoid arthritis/other disorders but do not have the biomarkers (i.e. have seronegative RA) – I’m guessing he just believes the inflamed joints that he can see and image.

I’m not reassured by Dr Walitt’s assertions that ME/CFS is “real” and “biological” – for him, these terms do not mean that ME/CFS is not somatoform. His take on this is similar to Wessely, White, Sharp and co – the UK psychiatrists – who will say the same, but then explain that this is because thoughts are real and biological. I think it’s fair to say that for most health professionals, saying that a disease is real or biological necessarily means it’s not somatoform. So as long as we eventually get some biomarkers, those of us who have the biomarkers will be safe with the majority of health professionals.

There’s another really dangerous, arrogant assumption here – that we (meaning the current medical community) can measure things objectively and accurately. We can’t! I’m a health professional (not a doctor) and person with ME/CFS, and it’s so important not to lose the run of yourself as a clinician, to keep recognising the limitations of our tools. This is true even of those tools we think of as being most objective like X-rays. They’re only as good as the people making the machines, knowing when and how to use them, and how to interpret them. Or vitamin D function – when we test someone’s blood for vitamin D, we don’t get a measure of exactly how much sunshine and fish they’re exposed to, we get a measure of how that sunshine and fish and their genetic makeup has interacted with a huge array of other factors in their bodies that affect absorption and use of vitamin D that may be compensating (or not) for intake. All of these things we measure are just proxies. We’re measuring only the end result of an incredibly complex system of checks and balances.

When we get to things like cognitive testing, this is even more important. If a person reports, say, an intermittent difficulty with losing train of thought in conversations, then a cognitive screen like the MMSE is very unlikely to show anything – but this is because the MMSE is the wrong tool for the task, not because the person is misperceiving their level of cognitive dysfunction. People in the early stages of dementia will often be assessed a number of times and told they are fine before the tests start detecting an issue. Testing like this (much more detailed than MMSE) was part of my job, and I was really disturbed by the chemo-brain paper – on which both Dr Walitt and Leorey Saligan are co-authors. Walitt is a rheumatologist, and the other authors are listed as belonging to schools of nursing, anaesthesiology and Chinese medicine. These are not people who are engaged in cognitive testing on a day-to-day basis, trained in it, experienced in its execution and interpretation. The causal model proposed is potentially valuable for future treatments, but the labelling of chemobrain as somatoform cognitive dysfunction similar to that found in fibromyalgia and chronic fatigue syndrome (their words, not mine) is just daft. If it was helpful to patients in any way to label it as somatoform, then I could get behind it, but denying patients’ experience tends to be harmful, not helpful.
 

Tony L

Active Member
I registered a couple of weeks ago and haven't had time to tell my full story yet. Will do. In short, after a lifetime of regular (one ,often two per year) viral flu-like infections I started to develop mild but progressive ME (towards end of 90's), with continuing regular viral attacks. From around 2004 I had 2 bouts of noro virus per year until 2010 when although my youngest brought the virus home from school I did not catch it. Since then I catch nothing even when other family members are sick. This new-found immunity might seem good news but it has corresponded with ME symptoms becoming much more severe and in particular daily cognitive dysfunction has replaced the occasional fog previously experienced. I feel my brain is physically sick although routine scans reveal nothing abnormal. So it has been a long slow decline for me with the occasional more pronounced drop in functionality form which I never recover fully.

I thinks its fair to say that because of a slow onset of ME, together with the demands of raising 4 children, I kept away from the ME community. Perhaps there was also an element of arrogance that I couldn't see how I could possibly end up disabled by this, like them I guess. However over the last year I have come to realise that if i continue to decline then there may be serious implications for myself and the family. Hence I have spent the last few weeks catching up with what is happening to and for other sufferers of these awful diseases.

Here in the UK, sufferers in England have treatment options of GET/CBT or little else and here in Wales (3 million people) there are currently no services, although the Welsh assembly (the devolved government) has directed health boards to start developing treatment pathways based upon that in England i.e GET/CBT. There are some small charities involved in lobbying for government research funding and some fund small research projects directly. There is plenty of mistrust and anger towards the medical establishment here. A glance at the NICE response following their 'victory' over sufferers in the courts has my blood boiling very quickly. So in Wales we face the prospect of GET/CBT coming to a nearby hospital and perhaps also the prospect of pressure to cooperate for fear of loosing state benefits.

So from where I am sitting, US research offers the only current hope for identifying the molecular basis for our disease(s). Until the void that is the absence of a credible medical model for ME/FM is filled, then psychiatrists/psychologists will have too much space/freedom to air their more subjective opinions on our disease(s) and in the process (unintentionally) causing hurt to some very vulnerable people. We need hard objective science to come to our rescue and I do believe that we will have detailed pathology/assays as a result of the 21st century science planned and the subsequent expansion of molecular science in this field which will follow.

As someone who worked in biological research for 15 years these guys are entitled to have their say, that is their training and science works by open discussion. The fault lies in the previous lack of funding for expensive molecular science which has produced a bias towards inexpensive, more subjective, research. In the absence of answers to the riddle of ME the problem is that world wide media will look for a simple, clear answer to report. For example our Daily Mail stated a while back that following a report that two further viruses had been ruled out of involvement in ME it is somehow more likely that this is a mental-illness, helping to strengthen the myth among the general public.

Yes there is plenty to feel angry about but I believe that if the US gov/agencies stick by their words then this bias will be corrected eventually and dignity will be restored to ME/FM sufferers worldwide.

Tony
 

KME

Member
I love this illustration of how clinicians’ views of ME/CFS affect patients. Check out the graphs from the 2015 UK ME Association’s survey report called ME/CFS Illness Management Survey Results “No decisions about me without me” (http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf) The graphs are on p.35-8.

Whether clinicians thought ME/CFS was physical, a mix of physical and psychological or purely psychological had a pretty dramatic effect on how patients responded to different interventions. In the case of GET, if your clinician thought ME was physical, you had a 51% chance of getting worse. If your clinician thought ME was psychological, you had an 80% chance of getting worse – yikes. If your clinician thought ME/CFS was a mix of physical and psychological, you had a 64% chance of getting worse. The exact same trend was seen for both CBT and pacing.

So I’m going to stick with clinicians and researchers who unequivocally believe ME/CFS is physical, and only physical. I don’t want to be getting my rituximab infusion from someone who thinks ME/CFS is psychological or a mix and messing with my plans to be a major responder!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The moment I hear PSYCHOSOMATIC I want to put a fork into someone's eyeball and say "Well, you got the psycho right". I am just not following this experts reasoning at all of the other experts. I have a didactic memory and can read a 400 page book in about 5 hours in a nice quiet, comfortable environment on a good pain day.

But what clinicians and experts fail to understand is that we are different day to day, pain to pain, season to season, stressor to stressor. If too much is going on around me, and I am stressing about some problems and then you begin to ask me to make decisions, I can't do it.

I am noted for being a decision maker and problem solved. But too much stimulus, and I can't do this, I can't think, can't process, form words, think what I want to say or the word for it. I think, we are the experts of us and we have our whole picture. It's not just one day. It's a lot of days. Not some blind men with an Elephant.

And again, researchers don't have a true cross section of a population according to ratio analysis without a sampling of 1500 participants. So how do these studies and experts become the absolute authority with these paltry numbers??????? How does NIH accept this?

There's lots of us out there, throw a rock up in a crowd 7 times and I bet you will hit someone with CFS/ME or FM at least twice. You'll know because they'll be the ones who knock the snot out of you for hitting with a rock. Not hard to find.

I refuse to accept anything these people say about me and my many, many, "they don't know what the eff we have or how to really help us" friends till they get down and dirty and do some real case studies with real numbers, not some fudging quotes and quotas to fit their model, because it sure as hell is not helping us, real people with real lives living this everyday.

Thanks Cort for bringing us this in depth information. It let's me know to the NIH, they really don't take us seriously, we don't deserve studies, just sticky notes of regurgitated sticky notes.
I agree that it's the WORST word because to our minds it means a nothing disease - an unreal disease - something that is all in one's mind. Depression might actually be better because at least depression is real and serious. You really couldn't pick a much worse term.

Walitt said that he did not believe that ME/CFS is all in ones mind. He said it was in ME/CFS patients bodies. I may be missing something but I believe him because he wants to do physiological research. He could not have used a worse term though - and this outrage is what he gets for using a term with connotations like that to apply to a devastating disease.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Marcie Zinn is a researcher who along with her husband and Lenny Jason has published several papers on ME/CFS. I believe that Marcie also has ME/CFS. I will be doing an interview with them shortly.

1.Intrinsic Functional Hypoconnectivity in Core Neurocognitive Networks Suggests Central Nervous System Pathology in Patients with Myalgic Encephalomyelitis: A Pilot Study.
Zinn ML, Zinn MA, Jason LA.
Appl Psychophysiol Biofeedback. 2016 Feb 11. [Epub ahead of print]

Myalgic Encephalomyelitis: Symptoms and Biomarkers.
Jason LA, Zinn ML, Zinn MA.
Curr Neuropharmacol. 2015;13(5):701-34.


Marcie - just out of interest do you have a professional background in some sphere of medicine, or medical research? The reason I ask is because your very informed reply suggests as much (though I know there are legion sufferers/advocates who are simply very well-researched by dint of feeling so passionately about such a devastating and traduced illness.)

I also ask because I try to keep my own notes taken from articles and informed commenters and I always record the author and their professional or patient position. The hope is that some of this material might be used do if I improve enough to write articles again for the mainstream press. I was a journalist by profession pre-illness.

I am now much more ill than even this article suggests but I did have a piece recently published on ME/CFS in the Daily Telegraph - the focus was the urgent need for, and strength gained from, compassion in longterm severe and life-destroying illness FYI:- it can be read here http://goo.gl/1cPf5J
 

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