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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...

But does it though? Doesn't it highlight that the delivery plan was out of date before it was published? That is embarrassing how insufficient it is, along with the lack of funding - even more so in the face of these findings?

Chris was fantastic on BBC Scotland; this should have been been done 15 years ago but wasn't because of stigma

Oh. Dammit :banghead:

Absolutely..I have already sent most of it to my MP previously. Please use it wherever you can totally shout as loudly as possible I have been advised that we need to add: 2025 2nd Prevention of Future Deaths order following inquest of SJ Lewis And that the Delivery Plan says it will make...

Thank you @Trish I am as stumped as you; we seem to continually be banging out head against a brick wall. We are all taking all the actions we can and yet, still drowning.

Yes. This. I fundamentally disagree with the placatory approach being taken on this. We have had: 2002 The chief medical officer's working group report on CFS/M.E. 2006 The “Gibson report” Inquiry into the status of status of CFS / ME and ME and research into causes and treatment treatment...

Yes. Exactly this.

As the comments under the Pulse article demonstrate, no one cares. There is no shaming people who just aren't bothered. That the MP in charge didn't notice that they put out a press release without actually publishing the plan, and had to be told by another MP, and that this is the absolute...

Exactly this..I cannot understand how we keep reverting to the same thing, no matter how many times we demonstrate it is both unhelpful and unsuitable.

Is it just me that finds this deeply concerning?

I am getting this a lot when i first get up lately. Also new.

Same!!!