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"Is there a way forward for CFS/ME?" (Nov 13 MedicalNewsToday (MNT) article)

Tom Kindlon

Senior Member
Messages
1,734
I submitted this comment:

Thank you for the article.

I don't think it makes clear what the latest PACE Trial paper, on long-term follow-up, found: "Outcomes with SMC alone or APT improved from the 1 year outcome and were similar to CBT and GET at long-term follow-up".

SMC = Specialist Medical Care which is what everyone in the trial got. Three other groups got: APT= Adaptive Pacing Therapy; CBT = Cognitive Behavioral Therapy; GET = Graded Exercise Therapy.

The investigators tried to claim that the two non-CBT/GET groups (i.e. SMC alone and APT) caught up because of some of them doing CBT and GET. However, the data in the Appendix shows that there was no difference whether they did or did not do CBT or GET. So all four arms of the trial had similar results at follow-up, or a null result.
 

worldbackwards

Senior Member
Messages
2,051
While emphasizing that CFS/ME and depression are not the same thing, and that the role of depression is smaller than originally believed, Prof. Wessely explained that an overlap exists, and "rates of depression are too high to be simply explained by a reaction to physical illness.

He added that it has been "established beyond doubt" that previous depression increases the risk of CFS and mentions that antidepressants "don't seem to be particularly effective.""
It's the glib, "my word is God" way that he trots this bollocks out that really annoys me. Beyond doubt? Who's doubt would that be?
 

Tom Kindlon

Senior Member
Messages
1,734
He added that it has been "established beyond doubt" that previous depression increases the risk of CFS and mentions that antidepressants "don't seem to be particularly effective.""
Given that ME or CFS often takes years to be diagnosed, I imagine a lot of the "previous" cases were times when a person already had ME/CFS. Having undiagnosed ME/CFS could increase the risk of depression.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Prof. Wessely, who pioneered CBT for CFS/ME patients, told MNT that while there is clear evidence for an underlying biological cause for the disease, as seen in neuroendocrine profiles, CBT can help patients to cope with the challenges they face.

The important thing, he says, is for physicians to start from the basic principle that the patient has a real illness, and he explained that while CBT is not a "magic bullet," it is safe and can help patients make the best of their situation.

Once again Wessely pretends that the CBT offered to ME/CFS patients is like that offered in other illnesses, which makes us look silly for refusing it
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Once again Wessely pretends that the CBT offered to ME/CFS patients is like that offered in other illnesses, which makes us look silly for refusing it

I addressed that in my comment:

Thank you for your article. It is good to see biomedical research being given prominence.

The PACE trial in fact has just shown null results at long-term follow-up. There was no difference between groups, and since all groups received standard medical care, the addition of CBT and graded exercise therapy clearly had no effect at all. The PACE authors' promotion of the findings as successful has caused great anger among scientists as well as patients. Professor James Coyne, for example, has written a damning critique on his Public Library of Science blog.

Six prominent scientists today published an open letter to The Lancet, which published the study, saying "the study suffered from major flaws that have raised serious concerns about the validity, reliability and integrity of the findings."

http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/

The CBT used in the trial and imposed upon patients through the NHS is not normal CBT designed to "help patients to cope with the challenges they face" as Professor Wessely seems to suggest. It is specifically based on a model of the illness in which there in no longer any pathology and patients are merely deconditioned and must be encouraged to exercise their way out of it. This is explicit in the PACE Lancet paper.

Over 10,000 people have signed a petition calling for the misleading claims made in PACE to be retracted:

http://my.meaction.net/petitions/pace-trial-needs-review-now

To answer your question: there is a way forward for ME/CFS, but it requires psychiatrists to get out of the way.​
 
Messages
83
The CBT used in the trial and imposed upon patients through the NHS is not normal CBT designed to "help patients to cope with the challenges they face" as Professor Wessely seems to suggest. It is specifically based on a model of the illness in which there in no longer any pathology and patients are merely deconditioned and must be encouraged to exercise their way out of it. This is explicit in the PACE Lancet paper.​
Repeat ad infinitum.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Actually this article overall isn't bad. The writer has made an effort I think; information about evidence that ME/CFS is a biomedical condition is given.

About PACE; the CBT result is prefaced by 'the study authors say'.
The study authors say their results indicate long-term success, especially for CBT, but members of the patient community have disputed them on a number of counts, including recruitment, research methodology and interpretation of results.

One criticism was that by focusing on more able patients, the study was not representative, as it disregarded those who are more severely disabled by the condition, or those who are prone to relapse after exercise.

@Tom Kindlon's and @Sasha's submitted comments were certainly needed. Never mind the fact that PACE included more able patients - the writer, like many, seems to have missed the fundamental fact that the followup PACE report showed that CBT and GET were no better than doing nothing much at all.

Yes, it's interesting how Wessley is reframing CBT as a support to people who in fact have a real, biomedical illness. If only he would be consistent on that line, that would be a sort of victory for us.

But, if I knew nothing much about ME/CFS, I would come away from this article pretty convinced that there is a real underlying pathology to the illness. And there's no mention of death threats or unreasonable patients. :)
 

Vasha

Senior Member
Messages
119
@Sasha, your comment is excellent. Thank you!

I think this article is very good. It starts from the right premise:
" First thought to be a psychiatric disorder, CFS is now recognized as a severe physical illness, although the uncertainty of its origin has plagued progress in diagnosis and treatment.

However, growing evidence of physiological biomarkers is now emerging."

And then walks through quite a bit of recent research.

The reporter didn't know/didn't focus on the fact that CBT as promoted in the UK for ME/CFS is not about coping but about "false" illness beliefs, and missed some main issues with PACE, so @Sasha's and @Tom Kindlon's comments are quite important.

I am having some trouble commenting (something to do with their Javascript) but am trying.

Also, please note that the article has a star rating option-- it has an option for patients/public, and one for health professionals. I was able to give it 4 stars. I've noticed that others of their articles that are pretty accurate (never perfect, of course), get low star ratings from health professionals. Sigh. In any case, it seems a good idea to give the author a good star rating if you agree that she did quite a good job.

Vasha
 

Vasha

Senior Member
Messages
119
Yes, it's interesting how Wessley is reframing CBT as a support to people who in fact have a real, biomedical illness. If only he would be consistent on that line, that would be a sort of victory for us.)

Yes @Hutan I noticed that as well--and thought the first half of that sentence was also interesting:

"Prof. Wessely, who pioneered CBT for CFS/ME patients, told MNT that while there is clear evidence for an underlying biological cause for the disease, as seen in neuroendocrine profiles, CBT can help patients to cope with the challenges they face.

This is awfully optimistic (especially after that whole "PACE is a cruise ship" apology for the PACE trial) but maybe he is trying to make room to evolve.
Vasha
 

Vasha

Senior Member
Messages
119
I think the comments are all held for moderation. In any case, I can't see any. But I did manage to send one for posting (a bit longer than I intended):

Ms. Brazier, thank you for this thorough article, and especially for walking through some of the recent biomedical research into ME/CFS.

Much is promising today, including:
-the Institute of Medicine's comprehensive report, which reviewed thousands of studies, and concluded: "The primary message of the committee’s report is that ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients." The IOM called for much more research funding, expressing surprise that there has been so little to date.
http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

and

-the NIH's recent announcement in response to the IOM report that they will "ramp up" biomedical research into this illness, which has been woefully underfunded (at about $5 million a year for many years, less than hay fever).

As others have pointed out, the article does miss some of the biggest questions surrounding the scientific validity of the PACE trial. It also misses the fact that "CBT," as discussed in relation to PACE-style treatment, is not about coping, but about overcoming "false illness beliefs" -- i.e., thinking oneself healthy. CBT to help patients cope, as in other serious diseases, might be helpful. But the CBT pushed on ME/CFS patients in the UK is wholly inappropriate for this physical disease. ME/CFS patients can no more "think" themselves healthy than can multiple sclerosis, AIDS, or cancer patients.

Beyond the research noted in this article, there are other promising threads, including:
-exercise physiology research, gene expression research, and other work, which is beginning to sketch out why exertion (which may be only getting up to use the bathroom, or for the most seriously ill, rolling over in bed) causes adverse physiological reactions in ME/CFS patients.

-research into treatment for ME/CFS, most excitingly, research into rituximab, a monoclonal antibody used in B cell cancers and autoimmune diseases, which in early trials has shown a 60-70% success rate for improvement, and is now in a Phase III trial.

-research into causes and triggers, which could someday help prevention. If rituximab continues to show results, for example, this suggests a B-cell-mediated autoimmune disease in responders.

Again, thank you for this helpful article. Hopefully, there will be many more answers to report soon.