Monitoring treatment harm in ME/CFS: A freedom-of-information study of National Health Service specialist centres in England. (McPhee et al 2019)

[Murph]

J Health Psychol. 2019 Jun 24:1359105319854532. doi: 10.1177/1359105319854532. [Epub ahead of print]
Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England.
McPhee G1, Baldwin A1, Kindlon T2, Hughes BM3.
Author information

Abstract
The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy. This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm.

We surveyed the National Health Service-affiliated myalgic encephalomyelitis/chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms. We sent 57 clinics standardised information requests under the United Kingdom's Freedom of Information Act. Data were received from 38 clinics. Clinics were highly inconsistent in their approaches to the issue of treatment-related harm. They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff.

Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment. In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.

KEYWORDS:

chronic fatigue syndrome; clinics; cognitive behavioural therapy; graded exercise therapy; myalgic encephalomyelitis; therapeutic harm; therapeutic risk

PMID: 31234662 DOI: 10.1177/1359105319854532

 

[Murph]

Massive shout out to PR's very own @Tom Kindlon for this paper!

 

[percyval577]

A thank you to the authors.

... This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm. ...

Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment.

Sad of course that such an article is necessary.

Only two years ago I would not have believed that such level of low wit, such lack of logical thinking and such an absent care for other humans would have been possible.

It´s not only that some researchers (and doctors) are not able to imagine that there may be complicate matters at work which is still a tough task to investigate, but also that the disease - obviously in itself and/or per definition - is not allowing for graduate exercise.

Is it really that difficult to take into consideration Post-Exertional-Worsening and Pacing?

 

[Tom Kindlon]

I am worried that exercise may make me worse

You may be worried that any increase in exercise or physical activity could make your condition worse. Be reassured – research has shown that a guided, gradual increase in exercise can help people who suffer from CFS/ME without causing ill effects.

This didn't make it to the final paper text, but is publicly available on the Cambridge and Peterborough Foundation Trust website

https://www.cpft.nhs.uk/PDF/Miscellaneous/How to Exercise with CFS Booklet May 2017.pdf

 

[Rufous McKinney]

This didn't make it to the final paper text, but is publicly available on the Cambridge and Peterborough Foundation Trust website

https://www.cpft.nhs.uk/PDF/Miscellaneous/How to Exercise with CFS Booklet May 2017.pdf

I do not object to trying to exercise more, within one's apparently narrow envelop for tolerance.

But I am not very confident in "research" suggesting a lack of harm...... or that we understand this illness well enough to make such statements.

At this moment, I had to increase my activity levels (I had to travel 1800 miles or be disowned)...and over the course of this last month, I have HAD TO walk more (instead of walking in my two room apartment, I now have 100 feet to cross, which I do several times per day, plus a little walking and standing on short outtings.

I feel a little more muscular strength. I feel a little less horrifically weak. Lymph is less stagnent.
Thats nice, isn't it?

But now I seem to have daily episodes of Tachycardia....and more fibro-pain and the Brain Fog and Cognitive show little improvement. I lost all the blood sugar improvements I had gained, also. And I'm not eating sugar...whats wrong? This exercising? Moving? despite all the rest of it?

So: what does this mean? Is that trade off worth it? Or am I causing more long term damage?