Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

They make no mention that the whiners are the same people whose work has been rated as awful, which is completely unserious. This is extremely relevant, they have huge biases and conflicts of interest listed right below their commentary. And massively distort what happened. They make it seem as if all NICE did is look at some anecdotes and recommended a "treatment", which pacing isn't, based on nothing.

Yellow journalism, basically propaganda. In academia. Absurd. Completely absurd lack of integrity. This system is broken beyond repair.

 

The German IQWIG report was discussed here: https://www.s4me.info/threads/germa...ment-on-me-cfs-report-out-now-may-2023.21266/.

I'm not sure about the Dutch thing.

 

Sealioning. Plenty has been written already. This is not sincere. Or at least it doesn't seem to be at all.

 

I post this on behalf of @MSEsperanza, who is currently unable to post:


In reply to others' questions about the definition of GET.

Not sure about the exact wording, but could it be helpful to check the
videos accompanying the PACE trial report in The Lancet?

Only remember vaguely but maybe the principal investigators very clearly
stated there that patients need to be persuaded that they have to
increase there physical activity to get better no matter how they feel
-- because the evidence allegedly says that GET is utterly safe?

Sorry not able to check /post myself, but here are the links to the 3
videos and audios (not sure but think audios have other/ additional
content to the videos)

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext#relVideo

Youtube links:

https://www.youtube.com/watch?v=QfHNQZPPB6k

(Chalder)

https://www.youtube.com/watch?v=jYRjB_t8dYs

(Sharpe)

https://www.youtube.com/watch?v=MR16NQhHdik

( Lancet TV reports from the press
conference )

And there's also the 'screenplay' with Dr. Clare Gerada (Simon Wessely's
wife) in the role of the omniscient GP and someone playing the role of a
patient with CFS that also could be helpful with regard what GET
proponents actually said --

@adambrokenbattery

@Dolphin

@Joan Crawford

@Adam pwme

 

Here is the clip of Clare Gerada saying

"If you feel rotten I still want you to do that activity... Even if you feel absolutely exhausted. I still want you to do your 10 minute walk in the morning and a 10 minute walk in the evening... It will be safe, all of the evidence that we've put together and all the research literature shows it's absolutely safe. You will not do yourself any harm."

https://twitter.com/user/status/1253599417564835842

 

And Sharpe saying they are safe after the follow up paper.

https://twitter.com/user/status/1534559247178113026

 

There is one comment from a GP (I think) under this article:

"David Jarvis 13 July, 2023 3:07 pm
Any guideline with ME in the title is going straight in the bin anyway for lack of rigour in using a pseudoscience sounding made up name. With no proven, as yet, pathological process it is by definition a syndrome."

Is he right? Or are there other known diseases that would be in a similar boat regarding strength of pathological evidence/process?

I would be interested to hear your views.

I know a few GP's socially and I often see them wince when I use the word, 'disease'. I always assumed that they don't realise how many ME/CFS studies there now are.
OR, am I wrong to describe ME/CFS as a disease? Are we not there yet regarding strength of evidence?

 

It's strange that Lancet TV never took off...

 

He has a fair point. There are a lot of very dubious names for medical conditions that continue simply out of convenience. But myalgic encephalomyelitis is to an extent in a league of its own for being dubious. It implies that there is brain inflammation when we can be pretty sure there isn't in any normal sense of the term. If it were not for the fact that the alternative name, CFS, has been so much associated with bad medicine I would strongly recommend that ME is replaced by something more appropriate. So I very much sympathise, and technically I think the GP is quite right, but life is more complicated.

I don't think ME/CFS warrants being called a disease. The term 'a disease' (with the article a) normally implies a process known to be due to some common cause, even if the cause is not fully understood. Tuberculosis is a disease. Skin melanoma is probably a disease. Lung silicosis is a disease. Rheumatoid arthritis is probably not a disease but might be allowed to be. ME/CFS doesn't get near to qualifying yet. It is genuinely a syndrome, as the GP said. I don't think SEID is a very good term, for that reason.

 

I appreciate you taking the time to clarify this. Thank you.

 

Supplementary Table 3: Other trials of graded exercise therapy
Trial Description of GET incremental approach

Wearden 1998 “Exercise intensity was increased when there was a consistent recorded reduction
of 10 beats per minute in post-exercise heart rate for one week and two points on
the perceived exertion scale...”

Powell 2001 “A graded exercise programme was designed in collaboration with each patient
and tailored to his or her functional abilities.”

Moss-Morris
2005
“Exercise goals were set collaboratively between the researcher and participant.
Initial exercise intensity and duration were set at a level that had been identified
during exercise testing as achievable and unlikely to exacerbate symptoms in the
patient.”

Wearden 2010 “The manual was reviewed, patient priorities were determined, and goals for
rehabilitation set collaboratively by the patient and therapist. Care was taken to set
goals at a level easily manageable by the patient.”

Wallman 2004 “Subjects were instructed to exercise every second day, unless they had a relapse.
If this occurred, or if symptoms became worse, the next exercise session was
shortened or cancelled. Subsequent exercise sessions were reduced to a length
that the subject felt was manageable.”

Jason 2007 “The aim was for behavioral homework to reinforce gradual, consistent increases in
selected physical activity and discourage rapid fluctuations in activity. Preliminary
targets were set at a safe, achievable level to maximize the likelihood of success. …
As an example of stretching and strengthening, the participant would start with
one set of four repetitions for each exercise. If the patient was successful with this
assignment and felt no physical repercussions or delayed recovery response, they
would then be encouraged to gradually progress until there was one set of eight

BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance

Supplemental material placed on this supplemental material which has been supplied by the author(s) J Neurol Neurosurg Psychiatry

doi: 10.1136/jnnp-2022-330463–8.:102023;J Neurol Neurosurg Psychiatry, et al.White P

 Quotes taken from published trials, not manuals

References:
Wearden AJ, Morriss RK, Mullis R, et al. Randomised, double-blind, placebo-controlled treatment
trial of fluoxetine and graded exercise for chronic fatigue syndrome. Br J Psychiatry 1998;178:485–
492. https://doi.org/1..1192/bjp.172.6.485
Powell P, Bentall RP, Nye FJ, Edwards RH. Randomised controlled trial of patient education to
encourage graded exercise in chronic fatigue syndrome. BMJ 2..1;322:387–39..
https://doi.org/1..1136/bmj.322.7283.387
Moss-Morriss R, Sharon C, Tobin R, Baldi JC. A randomized controlled graded exercise trial for chronic
fatigue syndrome: outcomes and mechanisms of change. J Health Psychol 2..5;1.:245–259.
https://doi.org/1..1177/13591.53.5.49774
Wearden AJ, Dowrick C, Chew-Graham C et al. Nurse led, home based self help treatment for
patients in primary care with chronic fatigue syndrome: randomised controlled trial, BMJ
2.1.;34.:1–12. https://doi.org/1..1136/bmj.c1777
Wallman KE, Morton AR, Goodman C, Grove R, Guilfoyle AM. Randomised controlled trial of graded
exercise in chronic fatigue syndrome. Med J Australia 2..4;18.:444–448.
https://doi.org/1..5694/j.1326-5377.2..4.tb.6.19.x
Jason L, Torres-Harding S, Friedberg F et al. Non-pharmacologic interventions for CFS: a randomized
trial. J Clin Psychol Med Settings 2..7;172:485–49.. https://doi.org/1..1..7/s1.88.-..7-9.9.-7
Windthorst P, Mazurak N, Kuske M, et al, Heart rate variability biofeedback therapy and graded
exercise training in management of chronic fatigue syndrome: an exploratory pilot study. J
Psychosom Res 2.17; 93:6–13. https://doi.org/1..1.16/j.jpsychores.2.16.11..14
repetitions was reached.”
Windthorst 2017 “The duration and exercise intensity were set at a level previously identified as
achievable under spirometry testing and unlikely to exacerbate the patients'
symptoms. … Patients were encouraged to reduce resting and avoiding behaviour
but simultaneously to watch carefully for symptoms and feelings of overload.”BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance
Supplemental material placed on this supplemental material which has been supplied by the author(s) J Neurol Neurosurg Psychiatry
doi: 10.1136/jnnp-2022-330463–8.:102023;J Neurol Neurosurg Psychiatry, et al.White P

 

Couldn’t agree more. From his comments David Jarvis sounds like the sort of doctor that try to ensure I never see a second time if I ever have the misfortune of encountering them.

In response to the question above there is an S4ME thread called Can we call ME/CFS a disease?

 

It’s should be fairly self-evident that a document which just had ME in the title would have even more doctors reacting like this. Some “ME only” advocates either don’t seem to recognise this or at least don’t mention it when discussing the pros and cons of using ME/CFS vs ME in educational material for doctors.

Put another way, I don’t use ME/CFS because I like the name CFS.

 

Does anyone have a link to the PACE manual for therapists (GET) that actually works, i had 2 links but they dont work anymore (inc the one on MEPedia)

 

https://www.qmul.ac.uk/wiph/media/t...lth-wiph/documents/5.get-therapist-manual.pdf

Other PACE trial documents here: https://www.qmul.ac.uk/wiph/centres/centre-for-psychiatry-and-mental-health/research/pace-trial/

 

Thanks

 

Wow. This is a really good read. Thanks Robert.

Although the thread does not come to a firm conclusion, I do feel better informed having read it