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As I understand it the Gibson Enquiry was just set up by one MP, and had no official status. If anyone wants to discuss it, we probably need a new thread. If there is to be an enquiry with any teeth, it needs to be officially set up by the government.

That's really good news. Such a pity the GP was so slow to believe you.

The bit about the contrast in research interest and funding really hits home with the description of what research meetings are like.

Do we have evidence of this pattern. Maybe worth a forum poll to see what other members experience is.

The UK listing includes a link to their webpage which says Cochrane UK is now closed, so presumably the contact details are out of date.

If some members want to work together to collect members views, and write a response, please do. Whether that becomes an official S4ME response will need committee approval. From my perspective as a committee member, I would say we don't have the resources to lead such a response. It may be...

And again I drop a few words into the void that is Hilda's talk page: trishrhymes October 22, 2024 at 1:59 am Your comment is awaiting moderation. Hilda, Another article for you to read and pass on to the IAG and people at Cochrane, please...

This strategy reminds me of workplace resilience training for people being bullied at work, which is the wrong way around. They should sack the bullies. Similarly, it should not be up to people with chronic illness to learn to cope with prejudice. It's the prejudice that needs to be tackled...

Huge thanks to @Chris Ponting and @Simon M. I think that's one of the best articles I've read about the current state of ME research and care. Well worth sharing widely.

Typing on my phone is a minefield of autocorrect and random accents. When I'm exhausted I don't notice all sorts of oddities appearing:emoji_koala: :emoji_frog:

All that work by so many people, and still they don't produce anything that makes sense to me as useful either for helping individual patients or improving services. It's all still based on therapist ĺed services as per BACME.

I have read the report from the MEAction representative on the BACME conference. I think it's very worrying that BACME is so wedded to its dysregulation model and the consequent advice about gradual exposure to sensory and physical stimuli. It's clear the ME Action UK group are also very worried...

It might be worth just pointing to the NÌCE and CDC guidelines.

I'll make a note to mods to clarify the headings. For some research, no prefix label is probably the best option.

My PEM was much more clearly defined as crashes necessitating 1 to 2 weeks off work when my ME was relatively mild and I was still working. I could usually look back at the day(s) preceding them and see I had pushed myself to more activity taking me over my limit. The trigger- delay - PEM...

They have a statistician on the team who does this sort of analysis for questionnaire development.

When my daughter and I both had flu vaccination a a few years ago (before Covid), the GP told us we had different vaccines because of our age on the grounds that younger people would not have been exposed to one of the variants included in their vaccine, and it wasn't included for older people...

So throw a heap of statistical analyses at 'data' collected from large sets of often vague and uninterpretable questions and hey presto you get validated questionnaires. :( There's something very wrong with this approach, as we've seen only too well with questionnaires such as the Chalder...

Does this mean he's asking for the 2021 NICE guideline to be reviewed with a view to changing it, or is he talking about implementation? Any ideas?

Thanks @Amw66 for putting it so bluntly and clearly. It needs to be said.