An Open Letter to BACME re ME/CFS Guide to Therapy 2025

Is it no obvious to these people that for most of us with ME the first thing we tried when we got sick, before ever hearing the name ME or CFS, was exercise? That our worlds got progressively smaller the more we tried to “rehab” ourselves?. That many of us were already experts in fitness or working out and knew a bit about how to rest, then take things slowly to try and gradually come out of this, and yet, it still failed? People are not stupid. The first thing anyone tries is go for a short walk, try to slowly increase, ok that failed so let’s try isometric exercises. Ok that failed, maybe I cannot do physical rehab but could do breathing / brain rehab.. ok, no that failed. Ah I have a disease where you cannot rehab out of it bc I am really seriously ill and need an actual medical therapeutic intervention. This is the first few years of every patients disease process and thinking. It is astonishing that they think they can lecture us on rehabilitation.
 
Jonathan Edwards said:
I was always one for conspiracy theories.
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It’s amazing how many respected scientific communicators are ;)

We had this when pubmed had DNS issues, some people who understood computer networks tried to explain, but nobody listened because some people with very big social media platforms who also regularly appear on TV were shouting that it was all an anti-science conspiracy by the US government.

All of us are prone to these things when we face something we don’t understand and there’s an explanation that fits our internal biases.

Sorry I’m going off topic. Although there is some crossover in that if more were willing to show some intellectual curiosity and simply say ‘I/we don’t know and don’t understand’ as @Jonathan Edwards did so well in the interview above, I think we’d be in a better place.
 
The semantics are a distraction from two inescapable facts:

1. Nobody should be wasting the resources of the healthcare system or of patients on interventions that have no evidence of efficacy, whether that's graded activity (as currently promoted by BACME) or crystal healing or ear seeds or the Lightning Process or supplement stacks or whatever.

2. Nobody should be justifying the use of unevidenced interventions on grounds of 'clinical experience', when dealing with a condition that can be long-term with fluctuations over months or years while their 'clinical experience' consists of limited contacts with patients over a period of weeks and no longer-term follow-up.
 
Braganca said:
Is it no obvious to these people that for most of us with ME the first thing we tried when we got sick, before ever hearing the name ME or CFS, was exercise?
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This is what always strikes me - how monumentally patronising this approach is. IIRC, one of the PACE manuals included informing the PwME that if they exerted themselves, they might go a bit red in the face but not to worry because that was normal - as though we had never inhabited human bodies.

I always try to think the best of people but I can't see how any therapist could believe these things without thinking we're all incredibly, off-the-charts stupid.
 
Barry said:
highlights how Sivan and Co. clearly feel there is no remaining illness in ME/CFS patients, only its lingering after effects
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Braganca said:
avoidance of spending government money on what they perceive as undeserving people who could actually get better if they just tried harder.
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Yes. these two statements seem to be the crux of the issue.

And when we explain the opposite is true, and that we are still ill, we are labelled as vexatious, difficult, emotional and don't know our own bodies or understand our own experiences and need to be "educated" by "experts"

there is a word for that...:unsure:
 
JellyBabyKid said:
Yes. these two statements seem to be the crux of the issue.

And when we explain the opposite is true, and that we are still ill, we are labelled as vexatious, difficult, emotional and don't know our own bodies or understand our own experiences and need to be "educated" by "experts"

there is a word for that...:unsure:
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The extreme injustice in the fact that those of us who 'try to get better' in the way they would want often end up the sickest and thus as the biggest recipients of their disdain and neglect will never cease to make my head spin.
 
JellyBabyKid said:
Yes. Somehow that's our fault as well, for not doing it "properly", believing enough or trying hard enough
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It breaks my heart, honestly. I tried so hard. My partner did too, as did several friends who deteriorated from exercise. People who wanted to get better and work full time and live full lives.

I would give anything now for the life of mild ME I tried to escape. And it was quite shit in the grand scheme of things!
JellyBabyKid said:
willful
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Yes, that's the operative word. It's the act of a zealot ignoring the evidence against their faith.
 
hotblack said:
It’s amazing seeing that FINE trial stuff and considering it alongside PACE. The MRC and DHSC fund that junk but won’t fund SequenceME.
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I think we’ve got in that contrast/example something that should convince the more disinterested and cynical to pwme s story. Presented right then it starts being pretty hard for them to retort conspiracy theory to that and have to admit ‘something not normal’ has been going on ?
 
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