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

[leela]

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.​

Sasha, I didn't think it possible, but I think you have outdone yourself. What an excellent comment!

 

[biophile]

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.

Wessely may have been misinterpreted. I highly doubt he believes mildly decreased cortisol output is the cause of CFS. AFAIK he sees the neuroendocrine profile as a behavioural consequence which is reversed with CBT/GET. Not to mention that the CBT he has promoted for decades goes a little beyond merely helping patients "cope with the challenges they face".

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."

Depression as a factor for onset, based on what evidence?

IIRC he is basing this largely on population studies which use retrospective recall and self-diagnosis, both reasons for doubt.

 

[SOC]

IIRC he is basing this largely on population studies which use retrospective recall and self-diagnosis, both reasons for doubt.

Well yeah, since that is apparently his personal standard for high quality research. Fortunately, not much of the scientific world agrees with him on that.

 

[Sean]

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

He's a consummate politician. If any of the psychiatrists come out of this on top, and probably claiming "I was saying this all along", it will be him.

Well, we better make sure that he doesn't get away with it.

 

[Sidereal]

Spectacular comment, @Sasha.

 

[Sean]

I can't see any comments under that article. Am I not spotting the 'Display Comments' button? Do I have to register to see comments?

 

[Sasha]

I can't see any comments under that article. Am I not spotting the 'Display Comments' button? Do I have to register to see comments?

I can't see any either. Hope I didn't waste my time.

 

[alex3619]

Having undiagnosed ME/CFS could increase the risk of depression.

I would like to change this to - Having undiagnosed ME/CFS could increase the risk of diagnosis of depression due to shared symptoms. Whether or not this is actual depression has yet to be established.

 

[Valentijn]

I made a comment too, focusing on the Wessely statements since those were the only gross inaccuracies.

Basically I pointed out Wessely's views from his published papers: he does not believe there is a biological cause, aside from the trigger. After that it's psychosomatic and behavior-induced symptoms all the way. I quoted his Awylward letter where he says "The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry."

Also pointed out that the CBT he created is far different from normal CBT. Illness-denial, not coping, and it's misleading and perverse to label his own treatment the same way. Though that's par for the course, since PACE did the same thing in labeling patients as "recovered" even if physicial function declined and fatigue increased during the course of the trial.

Finally I went into the HADS scale, and why it sucks for determining depression: points are scored based of behavioral changes, regardless of a biological cause for those changes. Also that patients can be labeled as "more depressed" than normal people, even when they fail to meet the threshold required for a depression diagnosis.

I wrapped it up by encouraging them to do more ME/CFS articles (it was pretty good aside from Wessely), and suggested the various BPS shenanigans (such as Wessely's current revisionism) as an interesting angle to pursue.

 

[Valentijn]

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.

He's not evolving ... he's attempting to rewrite history. Deliberate revisionism suggests the exact opposite of evolving. And his depression comments come awfully close to suggesting there is still an excessively symptomatic non-biological component to be "cured" with his nasty brand of CBT.

If anything I'd say he's revolving ... orbiting around the "CBT is necessary to fully cure it" concept to seek a new angle of attack. I don't think someone can be said to be evolving while continuing to twist things. In the case of actual evolution I'd expect to see him acknowledging the biological research (far beyond mere endocrinology), and to cease turning it into a CBT discussion at every opportunity.

 

[worldbackwards]

He's not evolving ...If anything I'd say he's revolving

 

[Sean]

Finally I went into the HADS scale,

I have some vague recollection that the HADS scale has problems and limitations when using it to evaluate sick patient populations.

Might just be a dodgy memory on my part. Might be thinking of instruments for assessing somatisation.

He's not evolving ... he's attempting to rewrite history.

Yep, and we must make sure he does not get away with it.

He is without doubt the intellectual godfather and chief salesman for the cognitive-behavioural model of ME/CFS, and – along with some others – he must be held to account for its failure, and (at least a big chunk of) the appalling consequences of it.

We are not here for the likes of him to play games with. There is a case to answer.

 

[Valentijn]

I have some vague recollection that the HADS scale has problems and limitations when using it to evaluate sick patient populations.

Basically it's for patients in a hospital setting (hence the "Hospital" in the title ). People with simple acute problems who are being treated and cared for.

It's quite odd to use in on complicated chronic illnesses where patients have no medical treatment and are often neglected.

 

[Valentijn]

4 comments ("opinions") are now posted, as of about 2 hours ago. They're on a separate page at http://www.medicalnewstoday.com/opinions/191532

 

[Sasha]

4 comments ("opinions") are now posted, as of about 2 hours ago. They're on a separate page at http://www.medicalnewstoday.com/opinions/191532

Thanks, Val - I only see three, though - yours, mine and @Vasha's.

 

[Valentijn]

Thanks, Val - I only see three, though - yours, mine and @Vasha's.

I see Tom Kindlon's at the top. It's a bit shorter though.

 

[Gijs]

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.

Wessely is wrong. ME/CFS is NOT depression at all! With depression you can feel better by GET with ME it is impossible. This is a paradoxal and objective observation. People with ME wants to do many things to enjoy. Ask them what the want to do if they are better. ME isn't a psychiatric disease.

 

[Sasha]

I see Tom Kindlon's at the top. It's a bit shorter though.

I don't see it. You must be special!

 

[Artstu]

The cream box

s There A Way Forward For CFS/ME?
Posted by Tom Kindlon on 13 Nov 2015 at 1:03 pmThank 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.