NICE guidelines - Evidence of harm from Graded Exercise therapy

And yes, I am Kirke 2017! Not how I usually refer to myself, but thought it would be helpful to keep the post above clear.

 

Yes ...



... this cuts to the heart of it, especially for an illness that is still so poorly understood, likely has a number of sub-types, and many people might be misdiagnosed anyway.

Just because a therapy seems to help some people, does not in anyway justify its use when such an enormously high percentage can be badly harmed, yet that harm not become apparent (even to the supposed experts) until it is too late, and the damage is irretrievably done.

If I look at the leaflet for my own medication, it does indeed have information about various possible side effects, and associated probabilities. But I have never yet seen a medication which includes a category where there is a 33% probability of being seriously harmed by taking the medication. If GET had to be accompanied by a similar leaflet, I think there might be a different perspective. It's not just about who improves, but who is harmed. True, if you are dying of cancer, you might then be willing to try a high risk but possibly high benefit treatment, but even then the cards should be laid out honestly on the table.

 

Indeed. There is also a telling graph on page 206 of the 2012 ME Association survey:



This graph shows the percentage of patients who fall into the mild, moderate, severe and very severe categories of ME/CFS before treatment, and then after treatment.

You can see that for GET (the two central columns in the graph), the very severe category expanded from 7% before GET treatment to 25% after treatment.

And the moderate category shrunk from 50% down to 30% as a result of treatment, with those moderate patients clearly being worsened and thrown into the severe and very severe categories.

 

Realise a post of mine in the PACE trial thread is relevant here, so providing a link to it ...

https://www.s4me.info/threads/a-general-thread-on-the-pace-trial.807/page-21#post-130229

 

Emerge Australia Health and Welfare Survey is another patient survey to add to the weight of evidence.

https://emerge.org.au/wp-content/up...ing-Survey-of-Australians-with-MECFS-2018.pdf

Of the 586 people who responded to the question, “How does increasing your level of exercise/activity make you feel?”, “a total of 89% reported feeling worse, with 54% reporting they feel worse straight away and 35% reporting that they initially feel better, but then feel worse later. Very few indicate that this increased exercise approach helps them feel better (5%).” (p. 39)

Those who were severe/very severe were more likely to indicate that increased activity made them feel worse (68% reported feeling worse, 26% reported feeling better initially and then worse), than those with mild/moderate illness (42% reported feeling worse, 43% reported feeling better initially and then worse). (p. 39)

“Most of those who report that increased exercise/activity makes them feel worse indicate that it takes days to recover (69%), while for others it takes weeks (27%). Only 4% report that they recover in a matter of hours.” (p. 40)

 

Kirke 2017 was what I was going to suggest Karen! A graph from your paper is often what we use for #MEAction stuff.

 

Is part of the problem, the failure by health professionals to acknowledge that this illness in many cases is PROGRESSIVE. I have had a relapsing remitting pattern with 3 sudden changes in level of severity that had absolutely nothing to do with my management strategy. NICE need to acknowledge that progression can occur just like any other illness.

 

Quite a lot of info collated here
Potential Dangers of Exercise or Activity for ME and Chronic Fatigue Syndrome
https://howtogeton.wordpress.com/20...cise-is-dangerous-for-people-with-me-and-cfs/