Evidence of harm from Graded Exercise therapy

Hip said:
If you examine the figures from the ME Association's large 2008 survey of 4,217 ME/CFS patients about the efficacy of various therapies, GET tops the table on page 10 as the therapy which made the most patients worse (56.5% were made worse by GET).
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Yes ...

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

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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.
 
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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)
 
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.
 
From "Management of ME/CFS in Belgium: An analysis based on patient needs, 2026, Cornelis et al":

Table 8 provides an overview of the self-reported effectiveness of the treatment(s) received by the 377 people that indicated to have received at least one treatment for ME/CFS during the past five years.
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Table 8 shows that of the 79 participants who responded about graded exercise therapy, 15 (19%) reported somewhat worsened symptoms and 30 (38%) reported substantially worsened symptoms as an effect of the treatment (total 57% worsened).

Figure 13 illustrates the burden of side effects associated with the different treatments the respondents received over the past five years. [...] Regarding graded exercise therapy, more than 75.0% of respondents experienced this treatment as moderately, very or extremely burdensome.
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75%

And that number is likely to be the best case scenario for GET.

This is horrific. For any other treatment and condition it would trigger an immediate and complete suspension of its use, a massive scandal, and a major public investigation into how it had all gone so wrong.

Except, of course, we are not worthy of such minimal standards and considerations. Coz reasons.
 
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