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Or complete abdication of responsibility and failure of duty.

If we have 404k pwME and 1.2m pwME; why is uptake always *so* low for advocacy? How do we make it easier for people to engage with actions so we can leverage numbers and apply more pressure? Being loud, applying pressure and shaming whichever government is the only way that they are ever going...

Genuine question: how?

No, but I would also be interested to read it if anyone gets hold of a copy. Thanks

Epistemic injustice = denying someone is a reliable narrator of their own experience Traumatic invalidation = repeated invalidation of someone's experience or reality Potentially leading to moral injury = profound psychological distress from actions (or inactions) that violate one's deeply...

Is has a name?! I have always had this. Interestingly, my dad and grandad both have/had chronic rhinitis and awful hayfever and sneezing.

SAME! it is like semi permanent hayfever, and I get very irritated eyes too. I have had chronic rhinitis for over a decade, but this is new and ANNOYING! I use a saline spray every morning, which helps and sometimes cold water face plunges, which definitely help. I am fortunately enough to...

Thanks. I was really struggling with IBS at the time. I find other mediations far more helpful. These were just...awkward. might have been me..they might work for someone else.

I am somewhat embarrassed to say I have tried Nerva, on the recommendation of a dietitian. It involves lots of education about how your gut works and guided meditations involving images of blocked or fast flowing rivers and imagining them flowing smoothly or being blocked with rocks to slow...

What a brilliant and eloquent review on GoodReads. Thank you for using your limited spoons to speak out.

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?