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I believe NICE ME/CFS guidance harms patients with misinformation. Here is one: keeping people with ME/CFS in the dark, implying the condition is permanent, and disallowing brain retraining and cognitive approaches other than helping people cope. NICE

I'm sorry you were not protected by people that only cared about the money and serving an agenda. This should be outlawed.

Recovery isn’t a threat unless your identity depends on people staying ill. Bias-driven doctors trying to erase patient recoveries because they don’t fit their narrative need to stop playing god. #MECFS #DoNoHarm

Research showing "chronicity rhetoric" inhibits biopsychosocial healing #mecfs #Fibromyalgia. Science in a top social science journal from excellent researchers tinyurl.com/ymhauapc

Researchers examine patient recovery in fibromyalgia, a condition related to other chronic fatigue conditions #mecfs #LongCovid . Here are their conclusions tinyurl.com/ymhauapc

This article highlights financial conflicts of interest for ME Charities (also applies to crowd-funded individuals) when they dismiss recovery and propagate "wait for a drug" narrative #MECFS #Fibromyalgia. Promotion of permanence and dismissal of mind-body approaches risks

A friend who recovered from #mecfs said a diagram to explain her symptoms would have helped her in her recovery. This one is good. This RCT dramatically reduced symptoms, improved physical functioning and halved sick leave. Lots about the intervention in the annex-obv. more than

"Chronicity rhetoric" in #MEcfs #longcovid shapes beliefs, influences unconcious expectations, and creates barriers to healing: predictive coding is important. Medics unaware of biopsychosocial approaches and the charities in #MECFS that deride it should be challenged.

"Chronicity rhetoric" underpins the UK NICE ME/CFS guidance. The word "recover" appears ONCE and then implies relapse. NICE contributes to a discourse that creates barriers to recovery. Shame on you.

An amazing group of people who have recovered from #mecfs #LongCovid are celebrating today as RECOVERY DAY! to highlight recovery is possible and counter the chronicity rhetoric tinyurl.com/a6rz78ac

Recovery is possible!

Chronicity rhetoric is toxic: "The Sick Times" exemplifies this. Obviously there are biological changes in #mecfs #longcovid but nocebo amplifies. See this from 2 years ago onlinelibrary.wiley.com/doi/10.1111/je…

I feel badly let down by the charities who were providing advice and support when I was ill. I know many others feel the same. It's time to have an open conversation about that. I don't want anyone else to go through what I did.

PACE trial was co-designed with Action for ME from a patient derived question. Trial results showed adaptive pacing inferior to CBT & GET. The RESULT led to attempts to discredit the study: an example of extreme belief disconfirmation bias. #mecfs

And I will say again: The PACE trial evaluated negotiated GET. It was not FORCED fixed increments. GET must be used in combination with a change in belief in what the symptoms mean: #mecfs is a psychophysiological condition, although this feels counterintuitive

Grok Fatigo_ME Paul Garner Biomedical research is full of hypotheses; no field has all the answers yet. But my point stands: bias-driven doctors denying patient recoveries by saying they ‘never had ME/CFS’ cause real harm. Lived experience deserves respect alongside science. Wouldn’t you agree Grok?

People who interpret #mecfs as purely biomedical frequently discount "mind-body" interventions as "think positive". This is incorrect. It's about changing your understanding of the meaning of the symptoms. And that takes time and work. This is a good summary

Sten Helmfrid 🇺🇦 Paul Garner The number of recovered people is growing month by month. That's what I care about more than anything. I am in touch with people who were severely ill for years who are making meaningful recoveries with the right support