NICE ME/CFS draft guideline - publication dates and delays 2020

Perhaps it is helpful to look at 'comparables' as one does in sports scouting.

In terms of general goal and absolute volume of valid scientific evidence, I would say that CBT's comparables on the open market are:

• Fortunetelling
• Religious Confession
  
• Life-Coaching
• Motivational Speaking
  
• Self-Help Books
• Advice Columns
• 'Twelve-Step'-like programs (Alcoholics Anonymous, e.g.)
  
• Psychoanalysis
• 'Therapy' (whatever mishmash of psychotheories the therapist prefers)
• probably more things

If consenting adults wish to engage with these things, I generally think that that is their business.

But medicine needs to understand that the things on this list that make a pretense to being scientifically-based are, in fact, 'Alternative' therapies at best. Indeed the comparables are by nature some mix of religion, quackery, 'bro-science', and 'folk wisdom' or something.

Quite possibly they should have no relation at all to the medical system unless there proves to be some indication based on reliable evidence.

 

Totally agree re the support. A friend whose son was diagnosed with Non Hodgkins Lymphoma a couple of years into my daughter's illness commented that she was immediately directed to all the finacial and other support available. School were amazing and a wall in their lounge was covered in cards.

For the first few months his life was in the balance and the family were in virtual lockdown due to his very low immunity, but he then improved and sat some GCSE's and got results for others based on teachers' assessments. He was then able to complete A-levels, while having a variety of chemo. So he was at most lessons.
They employed a Maths tutor, but he managed the other subjects and did well. He then had to delay Uni for a year as his treatment continued till the spring and he then needed 6 months clear before being re vaccinated with all the "childhood vaccines".

He finished his degree, has been working for a couple of years and got married in August, which is brilliant.

 

This

True. Dat.

 

This was posted in another thread but is relevant to the NICE committee here:

Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid

https://meassociation.org.uk/2020/1...d-exercise-therapy-in-me-cfs-post-long-covid/

Discussed here:
https://www.s4me.info/threads/the-m...cise-therapy-in-me-cfs-post-long-covid.17297/

 

https://twitter.com/user/status/1317100196229242887

https://twitter.com/user/status/1317100997441880065

 

https://twitter.com/user/status/1317370637619466240


Also note that they have used the #MEAwarenessHour at 2:52 pm on a Friday afternoon. It's nice (pun unintended) that they have tried to be more relevant to the community but getting things like that wrong make them look more out of touch unfortunately.

 

Date now corrected:

https://twitter.com/user/status/1318116585542963201

 

Trial by Error by David Tuller: NICE's Upcoming Draft Guidance on ME/CFS

The 2007 guidance for CFS/ME, concocted by a committee over-weighted with members and supporters of the biopsychosocial ideological brigades, recommended cognitive behavior and graded exercise therapy as the best treatments. When the bogus PACE results were published in 2011, they appeared to bolster the 2007 recommendations. Three years ago, NICE reversed its initial decision to leave the guidance as is after an outpouring of negative public comment. Now the revision process is coming to fruition.

I have no inside information, but I’m going to make a couple of guesses about the draft guidance.

 

Bullseye!

 

yes. The statement :
"
BACME does not support the deconditioning model of ME/CFS as a primary cause for the
condition."
should have read
"
BACME does not no longer supports the deconditioning model of ME/CFS as a primary cause for the
condition."
but even then "a primary cause" is open to interpretation.

Also, although BACME signed the "trans-national scientific position statement on Myalgic Encephalomyelitis (ME) that underpins the global advocacy led by the International Alliance for ME and affiliated individuals, and national professional organisations."
https://www.s4me.info/threads/iafme...and-respect-an-agenda-for-change-in-m-e.7049/

in 2018, which highlights the flaws of the PACE trial, BACMEs ‘Therapy and Symptom Management Guide’ which included:

was only removed sometime after May 2019 (and is still available through various NHS sites).

It will be interesting to see their new version of this ( although I imagine it won't appear until after the publication of the new NICE guidelines).

With all the posturing currently going on and attempts to rewrite history/delete 'the evidence' by various groups/people, a simple admission that they 'got it wrong' is unlikely to be forthcoming.

 

Thank for the blog @dave30th.

You write:

It may be harder to make the case that PACE-type CBT is harmful, but the psychological harms should be obvious to anybody who accepts that ME is not perpetuated by unhelpful beliefs – particularly as CBT is a psychological intervention designed and delivered by people who specialise in mental health.

Whether it is ME, cancer or any other illness, telling patients that they can reverse their illness “by their own efforts” by thinking differently when that is not true is cruel. In many cases CBT may lead to the same physical harms as GET by encouraging patients to push through symptoms in order to try to do more. But even if it doesn’t, we should not overlook the psychological harms of being lied to by therapists who, instead of helping patients come to terms with and manage their illnesses and disabilities, are telling them that their thoughts are preventing them from getting better. Regardless of the physical effects, that is psychological abuse in my view. And psychological abuse is harmful.

 

I agree. I was talking about the practicalities. Patients with ME should be able to get psychotherapy like anyone would without having to think they're getting it to "cure" the illness. So I think the committee will try to make that distinction but the language will be key.

 

In one study Chalder and colleagues found that people with MS who had CBT were less fatigued than healthy controls: https://pubmed.ncbi.nlm.nih.gov/18256342/

@Tom Kindlon referenced this study in his response to Cochrane review of exercise:
https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=269706093 [edited to correct the link]

 

Yes! Being as there is so much interest in psychological implications for ME/CFS, it's about time the psychological trauma of being maligned and mistreated, year in year out, by the very profession supposed to help you, was taken into account.

This not a trivial issue. What would be the consequences of medical professionals telling cancer patients that, although they may have had initial triggers for their illness, it was now only perpetuated by the patients' own unhelpful beliefs! How would that play out in the courtrooms for medical malpractice cases?

 

The Cochrane link doesn't work for me. One thing confuses me:

If the above is with reference to the Chalder MS study you linked to, then the control group is not of healthy patients. Seems to be saying it is from the same recruitment of MS patients, but receiving Relaxation Training, so that both groups received similar attention from therapists. Can only see abstract but that's what it seems to be.

 

Why should patients with ME be able to access psychotherapy on the NHS if we have no evidence that it is beneficial for such people - period? And quite likely no reliable evidence for any people.

Moral support is part of being human but I see no reason to call it psychotherapy.

 

A good friend and colleague died a few years ago from cancer, but before he got really ill and was still able to work, he told me the counselling sessions he and his wife both had were incredibly helpful for them both. But I don't know if counselling counts as psychotherapy or not.

 

I can foresee problems if the revised NICE guidelines continue to cite chronic fatigue as the core, defining symptom of 'ME/CFS', rather than PEM. If the guidelines are trying to also cover those chronically fatigued patients who do not have the specific symptom of exertion intolerance (as manifested in PEM, however patients describe and experience this) then it isn't going to meet the needs of PWME.