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It does make me wonder what happens if anyone says "DecodeME results" to them. I am quite sure their hypothesis/model will account for it though, in some gymnastic way. It's weird how these things always seem to, even before the research comes out :unsure:

"Post exertional malaise (PEM) is the name given to the experience of having a dip in energy, and reduced exercise tolerance, in the days following exertion (strainful exercise)". I think they are confusing PEM with DOMS there :unsure: My PEM is frequently confused with "have I got flu" or "...

Ah, I see.. thanks for clarifying.

Sorry, I don't get what you mean?

And what power have we patients got to say this is totally unsuitable? If we can coordinate with LC folks that's a lot of voices See: New Booklet: Prevalence of ME/CFS in the UK https://meassociation.org.uk/2025/11/new-booklet-prevalence-of-me-cfs-in-the-uk/

Seriously?! Weren't research questions identified as part of the NICE guidelines? Didn't we also have the James Lind priority setting partnership? How are we still in a scoping phase?!

My letter arrived the day after the scheme closed last year, and had to get my MPs office to chase it up, so I have already rung the helpline.

Thank you

Same My last submission was 108 pages. I have kept and scanned every piece of evidence for the 17 years I have seen sick. I used Google lens to copy all the questions off the form to a Google document, used voice typing and included a complete copy as my continuation sheets, so it was easier...

> Which ones please?

Matches the circular motion of government reports Which seem to be based on the idea that; we've been pressured into being seen to be doing something, this is something, it'll do

I am a 49 year old woman and have finally been diagnosed with ADHD and awaiting an autism assessment and I have had to fight like hell to get here. My ADHD means that my brain is going 110mph pretty much ALL THE TIME and is almost impossible to switch off, I cannot compartmentalise so can't do...

I am not sure that you should be asking pwME questions about it in that case. This reminded me of the Victoria Wood sketch about the woman carrying out a survey on Hellman's mayonnaise.." of course it's totally bona fide - totally fona bido" I'm always extremely wary of people who say "trust...

Does any other condition get asked to set goals for their condition? This is such a rehab mindset; if all you have is a hammer, everything looks like a nail My goal is simple; regain full health Doesn't need 3 questionnaires of 90 questions each. I imagine most other patients with most...

The irony; Isn't this what a certain person described CBT/GET as; an off ramp for pwME to "save face" in moving away from illness back to their old lives?

Thank you:thumbup:

> What AfME survey? Have I missed it ?

I was admitted to hospital for an unrelated issue during the pandemic and a doctor taking my history said "what's that?" in response to me saying I had ME/CFS

This is a very good point . I keep making the "just world" logical fallacy, despite knowing better

I have started pointing this out to my MP and included it in my consultation response to the Pathways to Work Green Paper; If it is our moral duty as citizens to work if we can, surely it is the government's moral duty to undertake research and provide suitable treatments to enable us to work...