BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

[JemPD]

When self proclaimed experts show so little understanding of ME after decades of treating ME patients, it is time to remove them entirely from the field.

I suspect those who say it helped them had therapists who stepped outside the straitjacket of cookbook CBT and did a bit of human listening and sympathising. That can be done by any empathic health professional, it doesn't have to be a 'therapist'.

This

 

[Invisible Woman]

But do we ever get to honestly hear the counterpart to that, the people who were not helped or were made worse by it, but dismissed as simply not following the "expert" advice?

We do to some extent on the big patient surveys where a significant proportion report being made worse by CBT for ME.

As @Trish said, to some extent. Many others will be left feeling guilty, shamed and inadequate. The damage to their confidence and self esteem will, in all likelihood, lead many of them to keep their mouths shut.

Not only is directive CBT very effective at changing how some people fill in a questionnaire there is no doubt in my mind that it is equally effective at silencing some who have been harmed by it.

Those people may have missed filling in patient surveys if they have withdrawn from contact with the ME community in the mistaken belief that this therapy works for most people and most people recover.

Edit - added a missing word.

 

[Sly Saint]

‘Therapy and Symptom Management Guide’? Their website says it’s currently under review

they now have updated versions of a couple of info sheets
BACME: ME/CFS Guide to Therapy October 2020
https://www.bacme.info/sites/bacme.info/files/BACME Guide to Therapy October 2020.pdf

and
ME/CFS Guide to Symptom Management
October 2020
https://www.bacme.info/sites/bacme.info/files/BACME Guide to Symptom Management October 2020.pdf

also available thro their website:
https://www.bacme.info/

 

[Jonathan Edwards]

So this seems to be GET without calling it GET and the same old desensitisation theory without calling it the same old theory.
The recommendations are not based on theory but based on sort of theory. The procedures are not defined tested procedures but undefined untested procedures.

It becomes about as meaningful as the lightening process.

One odd thing is that it says that patients prefer an interdisciplinary approach because it means seeing fewer people - which is odd since an interdisciplinary approach involves more people.

I have a sneaking feeling that this is a bid by the physiotherapists to take over all the interdisciplinary roles themselves - which is why they come first in the list. I think having a single health professional covering the management makes a lot of sense but I do not see why it should be a physiotherapist.

 

[Sly Saint]

Jessica Bavinton (MBACME)

from 2013 JB explains exercise

Sometimes people are concerned by what they have read online, or by someone else affected by their condition: people perhaps saying ‘exercise made me worse’, for example. Then, on the other hand you have the NHS promoting GET, and GET being supported by NICE guidelines and research. Very confusing. So what’s going on?

Fundamentally we are talking about two different things (This is a huge misunderstanding out there: a case of ‘Apples’ and ‘Pears’):
1) A Graded Exercise Therapy (GET) Programme for CFS/ME (Apple)
2) A ‘General Exercise Programme’ (Pear)

These are two totally different concepts and programmes, and have totally different results.

Therefore, it is quite right that people might say ‘exercise made me worse’, because at the wrong ‘dose’, ‘exercise’ probably will. However, it’s also right that people would say ‘Graded Exercise Therapy made me better’ as this is now strongly supported by research.


The main confusion comes when people inaccurately describe a ‘General Exercise Programme’ as ‘Graded Exercise Therapy’ when in fact it isn’t.

This is helpfully summarised by the NICE Guidelines for CFS/ME:
“Strategies that should not be used for CFS/ME [1.4.6]
The following strategies should not be offered to people with CFS/ME:
• Advice to undertake unsupervised, or unstructured, vigorous exercise (such as simply ‘go to the gym’ or ‘exercise more’) because this may worsen symptoms.” (p241)….In other words: ‘A General Exercise Programme’ (our ‘Pear’, above)

What IS recommended is defined as follows:
“6.3.1.2 Graded exercise therapy (GET)
1) GET is an evidence-based professionally mediated approach to CFS/ME involving appropriate physical assessment, mutually negotiated and meaningful goal-setting and education. An achievable baseline of physical activity is agreed, followed by individually tailored and planned increases in the duration of exercise. This is followed in turn by an increase in intensity when the patient is able, taking into account their preferences and objectives, current activity patterns, sleep, setbacks/relapses and other factors, with the objective of improving symptoms and functioning.” (p190)…. In other words: A Graded Exercise Therapy (GET) Programme for CFS/ME (our ‘Apple’).

Two things should help reassure you:
1) Nothing gets recommended by NICE unless it is both effective and safe
2) The PACE research trial, which explored GET (and other treatments) in great depth, also found GET to be effective and safe. Nothing gets published in The Lancet unless it’s very rigorous and checked out thoroughly.

So, as long as you are actually doing Graded Exercise Therapy, and not a General Exercise Programme, then you can be confident that you are on the right lines.

If you’d like to understand more about what GET actually is, and how it’s defined, then I’d recommend having a look at the NICE Guidelines for CFS/ME.

http://www.nice.org.uk/nicemedia/live/1 ... /36191.pdf

The following pages are useful:
• GET Definition: p190
• GET Programme Details: p246-247
• Strategies that should not be used: p241

PACE Research Trial – Article (Lancet publication):
http://www.thelancet.com/journals/lance ... 2/fulltext
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME

https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4604