• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Mallet, King, White: A UK based review of recommendations regarding the management of CFS

mango

Senior Member
Messages
905
A UK based review of recommendations regarding the management of chronic fatigue syndrome.

Mallet M1, King E1, White PD2.
  1. Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
  2. Wolfson Institute of Preventive Medicine, Barts and the London School of medicine and Dentistry, Queen Mary University of London, London, UK. Electronic address: p.d.white@qmul.ac.uk.
J Psychosom Res. 2016 Sep;88:33-5. doi: 10.1016/j.jpsychores.2016.07.008. Epub 2016 Jul 17.
DOI: 10.1016/j.jpsychores.2016.07.008

Abstract

OBJECTIVES:
Chronic fatigue syndrome (CFS) is a controversial illness, with apparent disagreements between medical authorities and patient support organisations regarding safe and effective treatments. The aim of this study was to measure the extent of different views regarding treatments, comparing patient support organisations and medical authorities in the UK.

METHODS:
Two independent raters analysed two groups of resources: UK patient support websites and both medical websites and textbooks. A 5-point Likert scale was developed with the question 'With what strength does the source recommend these treatments?' The various treatments were divided into the following four groups: complementary and alternative medicine (CAM), pharmacological, rehabilitative, and pacing therapies.

RESULTS:
There were significant differences between the scores for patient support organisations and medical sources for all 4 treatment groups. The results for supporting CAM were 74% (patient group) vs 16% (medical source) (p<0.001), 71% vs 42% for pharmacological (p=0.01), 28% vs 94% for rehabilitative (p<0.001) and 91% vs 50% for pacing treatments (p=0.001).

CONCLUSIONS:
There were substantially different treatment recommendations between patient support organisations and medical sources. Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews.

KEYWORDS:
Chronic fatigue syndrome; Management; Myalgic encephalomyelitis; Recommendations; Treatment

http://www.ncbi.nlm.nih.gov/pubmed/27521650
 
Last edited:
Messages
1,446
.
Thanks for posting this Mango. PDWhite still hanging in there. He is still pitting patients against doctors/medical authorities and vice versa. I can see years more of pointless useless research to occupy his time, and consume precious research funding.
 

mango

Senior Member
Messages
905
Comment on Pubmed Commons by Ellen M Goudsmit:
It should be noted that the PACE trial did not assess pacing as recommended by virtually all patient groups. This behavioural strategy is based on the observation that minimal exertion tends to exacerbate symptoms, plus the evidence that many with ME and CFS cannot gradually increase activity levels for more than a few days because of clinically significant adverse reactions [1]. It does not make any assumptions about aetiology. [...]

Continue reading:
http://www.ncbi.nlm.nih.gov/pubmed/27521650#cm27521650_23026
 

Keith Geraghty

Senior Member
Messages
491
"Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews."

the Jr of Psychosomatic Research seems to be the go-to journal for this sort of stuff. I will write an alternative conclusion "Since patients with CFS/ME dont agree with medical texts that CBT and GET are the best treatments for ME/CFS, doctors should start listening to patients, respect their views and ask why patients with the illness feel this way?"

the use of stats and statistical significance attached to a made up likert scale of subjective opinions by these authors on what constitutes 'recommendations' is just stretching the boundaries of statistics to the ridiculous
 
Last edited:

A.B.

Senior Member
Messages
3,780
They're trying to play the "evidence based" card, hoping to deceive the public which does not yet know that the evidence doesn't actually support CBT/GET, as seen in the recent addendum to the AHRQ review on the topic. When PACE falls apart, there will be nothing left in favor of CBT/GET except Oxford criteria based studies, presumably all with substantial weaknesses such as lack of blinding. They're actually only a few steps away from total discreditation.
 
Last edited:

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I believe the term is "home field advantage". Sharpe, Wessely, and White are all on the journal's advisory board.

....explains a lot. I wonder which of them picked the colour scheme. Based on previous conjecture, it's just GOT to be that Chalder had some say in the matter... That IS the one with the hot-pink cover, amirite?

They're actually only a few steps away from total discreditation.

I feel a book deal coming on, actually. Someone commented recently that all the BPS nonsense was slipping into the 'pulp pop science' category, something to be eagerly read by lay-public who find illness and the psyche just fascinating but have never taken a course in the hard sciences since high school.

They'll just keep sinking until they find an audience that:

1) Hasn't heard of them, yet
2) Doesn't have the scientific background to refute their 'common sense' psychiatric methodology

I'm serious. I think that White et al. will be just fine.
 

Denise

Senior Member
Messages
1,095
People looking to actively manage their own conditions talk more about over-the-counter treatments.

I wonder why we have to talk about OTC treatments....
Could it have ANYTHING to do with there not being FDA (comparable agency in other countries)-approved treatments?
Or that we are actively trying to manage our condition given that healthcare professionals aren't trained (appropriately) to do so?

Nah! Didn't think so. (<---- sarcasm)