Did the "Keep Psychiatry Out of the NIH Study On ME/CFS" Help or Hurt?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The petition to "Keep psychiatry out of the NIH study on ME/CFS study" is popular; it's gotten about 2,300 signatures and on the face of it, it makes sense. Who, after all, wants psychiatry in the largest NIH study ever done on chronic fatigue syndrome? I certainly don't. That's the last thing I want in a study we're hoping will help build a foundation for the next era of research into this illness.

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[/fright]I question, though, whether the petition has done much good. I am not questioning the petitioners commitment to supporting people with this disease. Their commitment is clear. I am questioning some assumptions that I believe underlie the petition and the veracity of some of the statements in the petition.

The petition begins by indirectly asserting that the study creators don't recognize or are willing to use the existing biomedical research into this illness to inform the study.

It is critical that the Principal Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.
P2P Mismatch?

The petition also states the study doesn't fit the P2P guidelines:

Indeed, it is difficult to ascertain just where the current study would fit within the recommendations of the P2P.
Much of the study design, however, could have come straight out of the report. In fact, in many places Dr. Nath's study goes considerably further than the P2P report proposed. The P2P report recommended that:

Biomarker identification be a priority and that virologic mechanisms, gene expression, protein, or metabolite signatures, fMRI and imaging technologies, the intestinal microbiome, immunologic mechanisms including natural killer cell dysfunction be studied. (It also stated that although ME/CFS is not a psychiatric disease, "exploring psychiatric comorbidities such as depression, anxiety, and fear is critical to improving quality of life".
The Nath study:
  • is doing the most comprehensive molecular profiling of immune cells ever done to date
  • includes several brain imaging projects
  • is measuring energy consumption in a metabolic chamber
  • is growing ME/CFS neurons using stem cell technology and testing them
  • is doing extensive autonomic nervous system testing
  • is transplanting the immune systems of ME/CFS patients into mice
  • is doing extensive viral testing
  • is analyzing the gut and saliva microbiome
  • is doing two-day exercise tests to assess the effects of exercise
The Executive Committee

The petition focuses on the membership of the "executive committee". It's not exactly clear what the executive committee will be doing - that is something of an area of concern. At this point they seem to be assessing whether the patients in the study meet the simple criteria for the study (infectious onset, meet the CCC, early duration patients) and giving them some initial questionnaires.

The makeup of the executive committee is not ideal but consider that the NIH was probably picking from a relatively small pool of doctors and researcher who were associated with the Clinical Center and could be on site to assess the patients.

The petition highlighted strikes against each of the members of the Executive Committee (except for Dr. Lipkin). While I understand the angst over having anyone that supports CBT/GET in the study, I question what that means.
  • If a doctor or researcher says something positive about CBT does that mean that the doctor thinks the disease is psychological?
  • If a doctor or researcher has included behavioral research in his portofolio, does that mean they cannot be trusted?
The petition-makers apparently think so. I'm not sure these issues - particularly in the U.S. - is that black/white.

Dr. Gill

In a 2011 NIH presentation Dr. Gill associated ME/CFS with neurasthenia (is that inaccurate?), cited findings which did not show evidence of viral infections or orthostatic intolerance, and of stating that CBT is helpful. He suggested the positive test results from unproven tests (such as viral tests) were likely to be false positive, then cites several pages of unproven treatments and ends stating that CBT/GET are the only therapies shown to provide meaningful benefit.

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[/fright]He also proposed that studies elucidating the neuro-immune-endocrine study and immune gene expression could turn out to be very helpful. He stated that there is typically no history of somatic disorders such as headache and low back and that the average ME/CFS patient was typically highly functioning before they were "struck down". He also said that the depression found in ME/CFS is "secondary"; i.e. it's not a primary feature of the disease.

He advised that physicians emphasize that ME/CFS is a real illness, that it is not malingering and that it can be completely incapacitating. They should inform the patient that even though they do not know the cause of ME/CFS (or as he repeated mispelled it CSF) have good treatments for it that they can help.

There are several things in there that might really tweak one. The key question is whether the fact that a doctor supports behavioral treatments means that he believes ME/CFS is a behavioral disorder? Or could it mean that he/she's just a conservative physician?

Gill states that ME/CFS is not depression, that it is a real illness and that the medical profession simply doesn't know the cause or have good treatments for it.

A look at Dr. Gill's background suggests that psychiatry might be the last thing on his mind. Dr. Gill is an internal medicine and infectious disease specialist and his publications focus almost exclusively on the immune system.

I leave open the possibility that Dr. Gill believes CBT/GET helps, and that that belief in no way conflicts with his idea that ME/CFS is also a real and serious, physiologically based disorder. At the end of the presentation he proposed that neuro-endocrine-immune and immune gene expression studies under way might provide clues to ME/CFS.

Dr. Leorey Saligan

[fright]Saligan, Leorey.jpg [/fright]Dr. Saligan is another kind of in-between figure. Saligan is exploring the "biobehavioral" aspects of cancer fatigue. He's recently found that the increased oxidative stress in red blood cells, mitochondrial issues, and the upregulation of neuroinflammatory factors contributed to fatigue in cancer. He's done numerous studies on gene expression and mitochondrial dysfunction in cancer.

With regards to post-cancer fatigue he's mostly focused on exploring the effects of HPA axis and sympathetic nervous system dysfunction on fatigue. Saligan also did a review paper on catastrophizing and cancer fatigue, and is interested in the effects of pain, sleep, depression and catastrophizing as well. It's not his main focus but he's clearly interested in that area.

Saligan has been the principal investigator of four Clinical Center studies:
  • Investigating Molecular-Genetic Correlates of Fatigue Experienced by Cancer Patients Receiving Treatment (11-NR-0014)
  • Molecular-Genetic Correlates of Fatigue in Cancer Patients Receiving Localized External Beam Radiation Therapy (09-NR-0088)
  • Fatigue in Healthy Individuals (09-NR-0131), and
  • Evaluation and Diagnosis of Potential Research Subjects with Pain and Fatigue Syndromes (08-NR-0132).
Brian Walitt

Brian Walitt has been covered before but suffice it to say that his idea that ME/CFS is a psychosomatic disorder is incredibly off-putting and the reaction to him being involved in the study is understandable.

Even Walitt, however, is not such a black/white figure. He does not believe that CBT or exercise (or drugs) are particularly helpful in fibromyalgia, and his research focus is mostly physiologically oriented. In a head-twister, he apparently wants to prove that ME/CFS and FM are physiologically based psychosomatic disorders.

Elizabeth Unger

Elizabeth Unger has done only physiological research since she took over the CDC's ME/CFS program. She has published studies on NK cell functioning, reduced telomere length, inflammatory gene expression and gynecological risk factors and has made studying ME/CFS experts and their patients a central focus. She has also archived the Toolkit and had moved CBT/GET to the management section of the document.

There's no indication that she believes ME/CFS is a psychological or behavioral disorder but Elizabeth Unger did not pass the CBT/GET litmus when she reportedly told a patient that there is scientific evidence for it - (there are dozens of studies on it after all) - so the petitioners asked that she be removed from the study.

The Committee Members

Things don't appear to be as simple in the U.S. as in the U.K. Every researcher and doctor that was linked to some sort of behavioral activity in this petition also has a strong background of physiological research.

These are not, therefore, Peter White or Simon Wessely-like figures. In fact, so far as I can tell, there are no Peter White or Wessely-like figures in positions of power in the U.S.. (Peter Manu is the last pure Wessely-like figure of note in the U.S. that I can think of, and he disappeared about 15 years ago.) The U.S. does do some behavioral research in ME/CFS, but it does much, much more physiological research, and it has for as long as I can remember.

It may be that in the past that a belief that CBT/GET may help often did indicate that a researcher or doctor had some psychological agenda but I suggest the possibility that it does not necessarily mean that today. Dozens have studies, perhaps many of them flawed, have been done on these subjects.

The more important question for me with regards to this study is what are the researchers main focus? A researcher focused on CBT/GET doesn't belong in this study and none of them are.

A Psychiatric Study

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[/fright]The petition presents the study as an attempt to define ME/CFS as a psychiatric disorder. (A passage in original form of the petition - which was changed after about 1,800 people had signed it - proposed that the study would return ME/CFS research to the dark ages.)

It's clear in the "reasons for signing the petition" that's the idea the petition got across:

"My life is wasting away while the NIH goes off in a direction that has been disproven over and over."
As severe ME sufferer in the UK I am too well aware of the damage done by allowing the psychiatric lobby,ANY input re this physical life destroying disease. Dont allow it to happen to you in the US!!!!!!!
ME/chornic Fatigue Syndrome is a physical disorder, not a psychiatric disorder.
Over 20 years with this illness; now housebound, and still they suggest it's psychological.
While feeling like I have the 'flu 365 days a year does indeed make me anxious and depressed, this study shouldn't focus on these conditions as the cause of the flu symptoms, rather they should treat them as comorbid conditions resulting from CFS/ME and search for the root cause of the underlying physical condition.
That's unfortunate because it deprives people with a devastating chronic illness of a legitimate source of hope.

Other Issues

In some places the petition is not accurate.

"This is the first study on ME/CFS conducted by NIH in two decades."
The NIH is currently funding somewhere around 10 extramural studies on ME/CFS and has been funding extramural studies (not very of them for sure) for decades. (To be more accurate, this is the first intramural study on ME/CFS done in the NIH's Clinical Center hospital.)

Two Day Exercise Tests Required For Entry

we are baffled as to why the two-day CPET exam is not a requirement for inclusion
The petitioners propose that the participants do a two-day exercise test before they enter the study. Who would be willing or able, though, to tolerate two two-day exercise tests? Some people would but I imagine that most would not. A bigger question is why such a harsh requirement is necessary for a study already being filled by ME/CFS practitioners?

Another question would be whether we would even want such restrictive guidelines? Would it be better if the study results referenced the subset of ME/CFS patients who failed the two-day exercise test or if reflected short duration, infectious onset patients who meet the CCC criteria?

No Psychiatric Conditions Be Considered

We would like reassurance in writing that no psychiatric conditions (as described in the petition) will be considered in this study
If this refers to patients entering the study, then the patients will all be coming from ME/CFS experts. If it refers to psychiatric questionnaires they're a standard part of any large study. Aside from those questionnaires there are no psychiatric components in this study.

Replace Executive Committee with ME/CFS Experts (Leonard Jason, Dan Peterson, Sue Levine, Nancy Klimas, and José Montoya.)

It's a nice idea, but if the role of the Executive Committee is largely confined to checking the patients in, etc. it's simply not feasible to have outside experts be present. It's also possible that the Committee members have to come from within the Intramural Center.

It's not clear exactly what the Committee is going to do. If these ME/CFS experts can be involved, of course, it would be preferable for them to be involved.

Conclusion

The figure putting together this study - Dr. Avindra Nath - is a neuroinfectious disease specialist who has put together, not surprisingly, a study that reflects his interests. He's stated he has no background in psychiatry and no interest in it and the study reflects that.

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[/fright]My conclusion is that while the intentions behind the petition were laudable that it does not help. While it certainly presents an area of concern - the presence of people who believe in CBT/GET, etc. in an important study - it ignores facts suggesting that these individuals feel ME/CFS is a real, serious physiological disorder.

From a pragmatic or strategic standpoint the petition is a failure; it has the potential to antagonize but not to effect change. After a major attempt to remove Brian Walitt failed it became clear that the NIH isn't going to budge on members with less severe problems. (There's certainly no way the NIH was ever going to remove someone like Elizabeth Unger from this study.)

The petition does reflect the belief held by many that no one who has said anything positive about CBT/GET should be allowed within ten miles of this and other studies. That's understandable but litmus tests like that may be difficult to achieve at an institution like the NIH.

The key question for me in any study is the focus of the study. If the study is focused on pathophysiology and the researchers main focus is physiology then I'm not particularly bothered by other issues. If this study had CBT/GET components, if it was focused on measuring psychiatric factors, if it had anything other than physiological elements in it that would be worth fighting for. I recognize that I'm different in that way.

In part, for better or worse, we are in the process of building relationships and gathering a community of researchers to study ME/CFS. Dr. Nath has referred to some push-back from NIH researchers who were apparently miffed by efforts to remove their colleagues. We'll never know exactly why they felt that way, but it does indicate that some researchers take attempts to knock their colleagues out of a study quite seriously.

That outcome (which no one expected) suggests that attempts to remove people from studies should be done judiciously, and only when really necessary; i.e. only when a person's ideas are so damaging and that person has such an ability to do damage, that it's worth antagonizing some people to get him/her out.

I also propose the possibility that while a belief in CBT/GET may have once been a huge red flag, and may still be a red flag, that it doesn't necessarily mean that that person believes this disease is not real or physiologically based. I believe we should put the person's history into context; i.e. determine what their main focus is - before we take action. In some cases, it might be better to just live with having some individuals in some studies.

The petition's failure to put the Committee membership into context of the whole study (it appears to play a small part in it) was, in my opinion, unfortunate. It has lead some people to have an unnecessarily dark view of a study that has the promise to move forward ME/CFS substantially.
 
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weyland

Well-Known Member
The NIH is currently funding somewhere around 10 studies on ME/CFS and has been funding studies (not very of them for sure) for decades. (This is the first study on ME/CFS done in the NIH's Clinical Center hospital)
I think it's clear they meant intramural study.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think it's clear they meant intramural study.
Let's just say that it reflects some sloppiness in the document...:) Other people - probably not many, for sure - might believe, though, that the NIH has never done an ME/CFS study until now.
 
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6String

Member
Hi Cort -
I'm a bit confused about the study and the petitioner's assumptions and reasons for objection to it.

It appears that the study is looking at causes - and not management issues. Am I right? It seems that GET and CBT could serve some purpose in the management file - possible useful means to some with a less severe case of ME - so as management tools why take them or anything else off the table? There are days when anyone even suggesting any form of exercise to me is so far off the mark it's not even wrong. But there are some days when light chores or walking alleviates some symptoms, at least while I'm doing them - sometimes I crash afterward and sometimes I don't - it's frustrating not knowing if I've overdone it until after the fact... it's all about pacing.

And do the petitioners fear the study will (claim to) find a psychological cause / basis for ME? As a 5 year ME patient, I find that ludicrous.
Thank you for the work you do and for a balanced report on this study.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi Cort -
I'm a bit confused about the study and the petitioner's assumptions and reasons for objection to it.

It appears that the study is looking at causes - and not management issues. Am I right? It seems that GET and CBT could serve some purpose in the management file - possible useful means to some with a less severe case of ME - so as management tools why take them or anything else off the table? There are days when anyone even suggesting any form of exercise to me is so far off the mark it's not even wrong. But there are some days when light chores or walking alleviates some symptoms, at least while I'm doing them - sometimes I crash afterward and sometimes I don't - it's frustrating not knowing if I've overdone it until after the fact... it's all about pacing.

And do the petitioners fear the study will (claim to) find a psychological cause / basis for ME? As a 5 year ME patient, I find that ludicrous.
Thank you for the work you do and for a balanced report on this study.
Yes, the study is looking at causes - not behavioral issues. I can understand the disquiet from having those individuals participate - in whatever ways they are - at this point it doesn't seem like much - in the study, although I'm confused as to what the Executive Committee does.

I wanted to point out, though, that their story does not end with the remarks that were highlighted in the petition; i.e. they are not like Peter White with his long history and total dedication to behavioral management. They're much more complicated figures.
 
Re the two day exercise test, while I understand the obvious reasons why so many want that (and not just in this study, but as the gold standard), I have serious concerns about it. There are quite a few of us who don't always have immediate PENE (or PEM). Sometimes it is delayed, and if the two day study starts to be considered the gold standard without the awareness that there is such a thing as delayed PENE, then a lot of patients could potentially be harmed by being told they don't have ME/CFS, when they definitely do.

I also have issues with the exercise test in that it has the potential to make many patients a lot sicker, and possibly not just temporarily. I know that for me, and many other patients, if we really overdo it, we never recover back to our previous level of functioning. Not knowing this when I first got sick, and then being forced into overdoing it anyway (for things like SSDI that I had no choice on, moving because of water pouring into my apt, etc), is the reason why I am so much sicker now than I was at the start.....I've had almost 12 yrs of constantly goign downhill, and every single time that I really got worse, I never did recover back to the level of functioning I had prior to overdoing it.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Re the two day exercise test, while I understand the obvious reasons why so many want that (and not just in this study, but as the gold standard), I have serious concerns about it. There are quite a few of us who don't always have immediate PENE (or PEM). Sometimes it is delayed, and if the two day study starts to be considered the gold standard without the awareness that there is such a thing as delayed PENE, then a lot of patients could potentially be harmed by being told they don't have ME/CFS, when they definitely do.

I also have issues with the exercise test in that it has the potential to make many patients a lot sicker, and possibly not just temporarily. I know that for me, and many other patients, if we really overdo it, we never recover back to our previous level of functioning. Not knowing this when I first got sick, and then being forced into overdoing it anyway (for things like SSDI that I had no choice on, moving because of water pouring into my apt, etc), is the reason why I am so much sicker now than I was at the start.....I've had almost 12 yrs of constantly goign downhill, and every single time that I really got worse, I never did recover back to the level of functioning I had prior to overdoing it.
The two-day exercise test is a challenge; that challenge is why I sincerely hope that Staci Stevens and Workwell are involved in the study - they know when to do them as safely as possible.

Even if the PENE is delayed thus far many of the 2-day tests do show drops in exercise capacity on the second test - so something physiologically is being captured at least much of the time.
 

phoebe333

New Member
I do understand the stance here, however I feel it is reflective of the profound stigmatization of "mental" illness in our culture: including the medical community.

The fact is that all "mental" disorders are in fact neurological and physiological. Each might have multiple causes, though none are the result of "willpower," or some sort of moral failure. The artificial dichotomy, between obsolete notions of "psychiatric" and "physiological" conditions, is ruling this discussion....I know why, and I understand its political implications, but it is a false dichotomy none-the-less.

My own story is an anecdotal case in point. To keep it short: I am depressed, I have severe dysautonomia, confirmed by small fiber biopsies and cardiac testing, and I am a former athlete who is now deconditioned. I feel all these symptoms might be traced to medication that proved to be neurotoxic, and all have made me disabled and bedbound for a year now. (I have not yet been offered a diagnosis of ME...but I'm here because I feel I could.)

I also have a history of trauma (which let's face it, is far more common among those with ME and fibromyalgia, than the general population). A history of trauma is known to have strong physiological repercussions. All of these "bio-behavioral" factors might be coalescing in my case, causing a profound physiological response. (As noted, I do consider depression to be physiological). I also stress this is one case....it does not speak to others' stories, although I'm sure its complexity is shared.

Just this week I had my neurologist do a blood draw to analyze whether specific inflammatory cytokines might be causing my depression, small fiber neuropathy, and my "sickness response." This has shown to be the case in trials...and it took much research on my part to get my neurologist to buy into this hypothesis.

So, I just would like those who shudder at the idea that ME might have what are commonly called "psychiatric" (among many) causes to think about what stereotypes might underlie their reactions. My personal view is ME is an umbrella term, much like "dysautonomia," that now covers a myriad of causes and consequences: including those now unfortunately (mis)labeled as psychiatric in origin.

To understand, and more importantly, successfully treat ME, might take a more open look at what factors and conditions comprise it. My great wish is to remove stigma and bias from the discussion and investigative approach of researchers and sufferers alike.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
I do understand the stance here, however I feel it is reflective of the profound stimatization of "mental" illness in our culture: including the medical community.

The fact is that all "mental" disorders are in fact neurological and physiological. Each might have multiple causes, though none are the result of "willpower," or some sort of moral failure. The artificial dichotomy, between obsolete notions of "psychiatric" and "physiological" conditions, is ruling this discussion....I know why, and I understand its political implications, but it is a false dichotomy none-the-less.

My own story is an anecdotal case in point. To keep it short: I am depressed, I have severe dysautonomia, confirmed by small fiber biopsies and cardiac testing, and I am a former athlete who is now deconditioned. I feel all these symptoms might be traced to medication that proved to be neurotoxic, and all have made me disabled and bedbound for a year now. (I have not yet been offered a diagnosis of ME...but I'm here because I feel I could.)

I also have a history of trauma (which let's face it, is far more common among those with ME and fibromyalgia, than the general population). A history of trauma is known to have strong physiological repercussions. All of these "bio-behavioral" factors might be coalescing in my case, causing a profound physiological response. (As noted, I do consider depression to be physiological). I also stress this is one case....it does not speak to others' stories, although I'm sure its complexity is shared.

Just this week I had my neurologist do a blood draw to analyze whether specific inflammatory cytokines might be causing my depression, small fiber neuropathy, and my "sickness response." This has shown to be the case in trials...and it took much research on my part to get my neurologist to buy into this hypothesis.

So, I just would like those who shudder at the idea that ME might have what are commonly called "psychiatric" (among many) causes to think about what stereotypes might underlie their reactions. My personal view is ME is an umbrella term, much like "dysautonomia," that now covers a myriad of causes and consequences: including those now unfortunately (mis)labeled as psychiatric in origin.

To understand, and more importantly, successfully treat ME, might take a more open look at what factors and conditions comprise it. My great wish is to remove stigma and bias from the discussion and investigative approach of researchers and sufferers alike.
Really interesting, Phoebe.

The ME/CFS community comes from a history of their disease being dismissed as not real and from a treatment background that has been absolutely dominated by two governments: the UK and the Netherlands which poured have poured millions and millions of dollars into behavioral modification treatment trials. Meanwhile proportionately little money has been spent examining other options. As a community these kinds of interventions bring all sorts of very negative connotations.

That said I think you're completely right about diseases causing all sorts of different types of symptoms. For myself, I am not depressed but the "revved uppedness of ME/CFS, the difficulty concentrating and doing things like planning ahead, etc. - those are all part of the ME/CFS world for me; this disease has physiological (inability to exercise) and psychological (difficulty settling down) manifestations - as do many diseases that effect the central nervous system do. We just need to be careful that researchers focus on the physiology.

I think given your constellation of symptoms and test results you're in the right place! Please let us know how the testing goes and good luck with your search.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Trauma earlier in life, of course, increases the risk of all sorts of illness issues - from depression to autoimmune disorders to cardiovascular disorders.
 

phoebe333

New Member
Really interesting, Phoebe.

The ME/CFS community comes from a history of their disease being dismissed as not real and from a treatment background that has been absolutely dominated by two governments: the UK and the Netherlands which poured have poured millions and millions of dollars into behavioral modification treatment trials. Meanwhile proportionately little money has been spent examining other options. As a community these kinds of interventions bring all sorts of very negative connotations.

That said I think you're completely right about diseases causing all sorts of different types of symptoms. For myself, I am not depressed but the "revved uppedness of ME/CFS, the difficulty concentrating and doing things like planning ahead, etc. - those are all part of the ME/CFS world for me; this disease has physiological (inability to exercise) and psychological (difficulty settling down) manifestations - as do many diseases that effect the central nervous system do. We just need to be careful that researchers focus on the physiology.

I think given your constellation of symptoms and test results you're in the right place! Please let us know how the testing goes and good luck with your search.
 

phoebe333

New Member
Thank you so much for your thoughtful reply Cort; this is is my first post, and I appreciate it!

I've been closely following this debate....I'm aware of the whole
CBT/graded exercise debacle. I definitely feel its emphasis undermines research. Yet, there is a need to cast the net wide when seeking causes.

Thanks again for your asking an open-minded question about this.
 

November Girl

Active Member
If the study is well done, I expect it to disprove the idea of a psychiatric cause. Part of being well-done is looking at all the neurological factors involved in ME/CFS but not in depression.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
If the study is well done, I expect it to disprove the idea of a psychiatric cause. Part of being well-done is looking at all the neurological factors involved in ME/CFS but not in depression.
Which is what's happening in this study. The patients are being provided by ME/CFS experts - (no primary depression patients are included) - plus, of course, they have to have infectious onset and meet the CCC criteria...it's really hard to see how a person with depression but not ME/CFS is going to sneak in there.

I think we're going to find out a lot! I just wish the study wasn't going to last two years!
 

weyland

Well-Known Member
And do the petitioners fear the study will (claim to) find a psychological cause / basis for ME? As a 5 year ME patient, I find that ludicrous.
Look at the latest IOM report on GWI if you want a case study of what could happen to ME if we don't strongly advocate for ourselves to keep psychiatry as far away from us as possible.
 

glori h

Member
I personally sought out psychiatric care to cope with the depression and anxiety associated with CFS/ME. It is life-changing and often life-shattering. Many. recommended drug therapies can only legally be prescribed by psychiatrists (FL). Stringent drug laws no longer allow RA's or GP 's to prescribe many controlled
substances that address fatigue, anxiety and chronic pain. Perhaps justification of treatment therapies needs to be addressed?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Look at the latest IOM report on GWI if you want a case study of what could happen to ME if we don't strongly advocate for ourselves to keep psychiatry as far away from us as possible.
yes...except we already have excellent IOM and P2P reports - and we have a large study focused entirely on biology going...

My question is do we need - or is it even wise - to attempt to remove any possible hint of behavioral issues at this point? My sense is that those issues have been taken care of in the US at the federal level anyway and that we're on the right path (so long as we have researchers to work with us (lol)...I'm sure we do :))
 

weyland

Well-Known Member
yes...except we already have excellent IOM and P2P reports - and we have a large study focused entirely on biology going...
I'm just saying that things can change rapidly when the right authority comes to the wrong conclusions. I think the ice we're on is thinner than we think. Look at what happened in the UK, in the beginning there was a strong biomedical approach that was completely reversed in a very short amount of time. I'm not very convinced by the "can't happen here" attitudes.

There's a whole cadre of people out there that very much want to redefine our disease out of existence and their narrative very much matches what people like Brian Walitt are saying.

My question is do we need - or is it even wise - to attempt to remove any possible hint of behavioral issues at this point?
Given the lessons we've learned from the PACE trial, yes it would be very wise to do so.
 

jodie100

New Member
I think behavioural factors can be a contributing factor in any chronic illness, physical or mental and it is unrealistic for CFS patients to think they should not be examined to a certain extent, although not as a primary cause. I have been reading recently about Hypermobility Ehlers Danlos Syndrome and CBT is recommended to help patients manage the disease, and I have seen graded exercise therapy recommended for mitochondrial disease, two examples of obviously physical illnesses for which CBT and GET are still useful.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think behavioural factors can be a contributing factor in any chronic illness, physical or mental and it is unrealistic for CFS patients to think they should not be examined to a certain extent, although not as a primary cause. I have been reading recently about Hypermobility Ehlers Danlos Syndrome and CBT is recommended to help patients manage the disease, and I have seen graded exercise therapy recommended for mitochondrial disease, two examples of obviously physical illnesses for which CBT and GET are still useful.
Nobody is taught how to manage a chronic illness that's for sure - let alone as one as functionally disabling as ME/CFS...So long the focus is management....
 

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