Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White

Detailed criticism has been published elsewhere already but it still be useful to write an overview of this complex topic situation from our perspective.

The main points are I think:

White repeatedly claims the treatment is beneficial but this claim is not supported by reliable evidence. If anything the evidence shows a lack of effect or an effect so small as to be irrelevant. The studies the CBT/GET proponents reference are designed so that it becomes difficult to distinguish a placebo treatment from one that truly works. The authors have never adequately responded to this criticism.

White also claims the treatment is safe, and his studies report little or no harm, yet patient surveys consistently show shockingly high rates of harm. The claim that this harm can be explained by improperly delivered GET is just a belief that lacks supporting data.

The withdrawal of CBT/GET is a based on an unfavorable benefit versus risk profile that also considers quality of evidence, not on "ideology".

To understand the discussion around CBT/GET and their safety, one needs to understand that according to modern definitions, ME/CFS is an illness that is aggravated, sometimes severely, by mental or physical activity. This type of exertion intolerance is called postexertional malaise. CBT/GET are based on a misunderstanding of postexertional malaise as unjustified fear rather than an accurate description of reality. CBT/GET are also based on the discredited idea that symptoms in ME/CFS arise from a lack of activity (deconditioning).

The apparent effectiveness of CBT/GET and the resulting discrepancy between the patient perspective and the CBT/GET literature can be entirely explained as an artifact of flawed and biased research methods. There is a major problem with quality of research in this area.

Edit:

The new NICE guideline was supported by a petition with over 20000 signatures, showing that patients welcomed the withdrawal of CBT/GET. I'm not aware of any significant patient support of CBT/GET. That White wants to reintroduce these treatments despite patients having clearly rejected them is disrespectful. Rather than asking "Why deny patients with chronic fatigue syndrome treatments that can help?" we should ask "If CBT/GET work, why has no clinical trial in the last 30 years demonstrated that these treatments are more than an elaborate placebo? As mentioned, CBT/GET are based on a serious misunderstanding and false theories, and so it would be surprising if they really worked.

 

yeah. i guess...does he mean "engaging in normal everyday MECFS LongCovid"? I don't really get it, but it doesn't matter!

 

I see that Health Sense requested that Carson contact them to outline the purported errors in Caroline’s piece. Notably, to my knowledge, they haven’t publicly (at least in the various Twitter threads) solicited the legions of commenters decimating White’s anemic arguments.

 

Two of us have pointed this hypocrisy to them on Twitter. I don't expect any response but they are showing how EBM is all about eminence, they only respond to vague allusions from a visible "expert", while ignoring substantial criticism from invisible people.

It's all about the size of the platform. The evidence doesn't actually matter.

 

I think he got a little carried away with his enthusiasm to hash-tag in #MECFS and #LongCOVID. Twitter does have a character limit for tweets, but even corrected to presumed intent, the following is in budget —

An experienced specialist in CFS/ME speaks. Faulty ideology distorted NICE's procedures.
Graded exercise therapy helps "by gradually removing the fear of engaging in usual everyday activities"
#MECFS #LongCovid
​

Twitter has no message editing feature (though expected to be added soon in some form). Currently when composing tweets one should "measure twice and cut once."

 

What would make the point of rebuttal to PW even better would be a few links to the relevant evidence backing the statements made.

Extra work I know. And most of us here know the evidence but always good to make the case solid.

 

I asked them to ask Carson to specify what my errors were, because he didn't reply when I asked him on Twitter. It's not fair to say publicly someone has made errors of fact and then refuse to say what they are.

 

It’s an exclusive club, and we aren’t in it. Broad generalizations are suitable for BPS luminaries, especially when conversing with members of the peasantry (us).

 

Oh, I thought it was fair if you have the title of Professor at a top UK university? Was I wrong on that?

 

Absolutely wrong, for reasons that I do not have time to go into.

 

Some random thoughts re Peter White's article (or at least how I recall it).

Brian Hughes has pointed out that unblinded studies require objective outcome criteria - we now have actimetry (FitBit type devices). Therefore, the outcome of an unblinded trial can be assessed objectively.
If we consider the economic cost of ME/CFS and an intervention is supposed to work then actimetry should demonstrate sustained increased activity - e.g. someone able to do normal household chores, maintain personal hygiene (shower when they wish to). There are lots of everyday activities that people with ME/CFS are deprived of and, if the intervention works, then these should be achievable. To be funded by the state surely an intervention should be objectively demonstrated to provide benefit?
Any other scientists would be grateful for a new technology which enabled them to measure something objectively (actimetry in this case) - as Lord Kelvin stated "if we cannot measure it then we cannot improve it". Look at the lesson of Chris Ponting, applying for funding to carry out a genetic study, to try to provide meaningful help to those with ME/CFS.

While there is a great deal of text in White's statement the only thing it illustrates is the truth of Max Planck's statement:
“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”
Or in this case, that we'll have to wait for another generation of scientists to objective assess (using FitBit's) whether these interventions works --- let's hope that new generation are already quietly at work.

@Caroline Struthers
Should have acknowledged that the reference to Max Planck's statement came from Brian Hughes recent talk to the Norwegian group -
https://us02web.zoom.us/webinar/reg...EBEKxMo5u42qHuj91fbzOBYrj_souFFZPkv9F31w6jsUA

 

Moved post

There is a letter in the Observer today ( hard copy, page 50) from White, Chalder and Sharpe which needs a (sharp) reply. It is in response to something written by Ravi V eriah Jacques.

Headed "Long Covid: does rehab work?

........
" But we disagree when he (Ravi Veriah Jacques) rejects rehabilitation treatments, such as graded exercise (GET) and cognitive behavioural therapy (CBT), which have been shown to help fatigue related to many illnesses, such as multiple sclerosis and CFS.

..............

CBT and GET may help some sufferers from long Covid but, unless we fund research to test them, we will never know for certain."

Do they really believe this rubbish? What about the new Nice guidelines? I hope someone will feel able to respond to this. Crashed- sorry.

 

Oh my gosh, can they not hear how stupid that sounds/is? Why not "Drinking bleach may help some sufferers from long Covid but, unless we fund research to test it, we will never know for certain." Or how about "Walking off a cliff like lemmings may help some sufferers from long Covid but, unless we fund research to test it, we will never know for certain." It would make as much sense. We already know CBT/GET don't help anyone with ME and can cause harm, and so they are unlikely to help anyone with Long COVID as it's such a similar condition.

And, why is it always about 'fatigue', when in reality the symptoms we and LC sufferers endure are far more numerous and far worse than that? Maybe CBT/GET helps with 'fatigue' in some conditions (although probably unlikely), but we already know from decades of experience with ME and two years with LC, that it doesn't help either of those conditions.

 

Full letter is here. Same old.

https://www.theguardian.com/theobse...-take-note-learning-is-about-more-than-recall

 

They are going to get many earfuls about this from long haulers, how their singular obsession with calling this all "fatigue" is a bunch of nonsense, and never learn a damn in the process. They can simply ignore everything they don't like as noise. They can only think of their career and self-interest, the rest of the visible universe only exists to satisfy their need for relevance.

 

What does "properly negotiated" even mean? This is healthcare, not a hostage crisis or a business deal. There is no negotiation to be had here. Also nevermind that specially trained therapists literally do worse since they do more of the thing that fails. The more BPS-trained the more woo they will be pushing, so obviously this doesn't make sense.

What they explicitly mean of course is belief, they need patients who belief in mind-body woo. Just like homeopaths need people who accept that homeopathy is genuine. But they can't say that, so they use nonsensical words to obfuscate, since they never say what they mean and never mean what they say.

 

I seem to remember one paper that seemed to show that therapists at King's were nothing like as good as those in Holland, but I may be misremembering!

 

I heard back from the HealthSense newsletter editor - nearly missed it as it went to my junk folder...

Hello Caroline,

Dr Carson replied to my request for clarification on his comment made on twitter and followed up with a personal response. No issues were raised that justify further publication, and the HealthSense committee have suggested that correspondence on this issue be drawn to a close as we have nothing of value to add.

Best wishes

Mandy

I replied asking whether they think it's OK for someone to say publicly I have made "several basic errors" and then not say what they are. And also to confirm I have a right to reply to White's post