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I get his point. It can be visible, but then so can MS or diabetes. For the most part, however, you can't see them. I think the 'invisible disabilities' message is quite clear and has changed the way a lot of people think about disability. I wouldn't want to undo that hard work and increase the...

If it's a charity or not for profit organisation, the funds are normally ringfenced so would have to go on ME. It may be that there's a clause that they have to donate any unspent monies to other charities with similar aims. Failing that, it would presumably go back to funders in due proportion...

Oh dear.

Thanks. I'll look up the other thread too. I agree it looks like a better solution.

Just reading this, I'm intrigued by the comment re: the ACR Improvement Criteria for rheumatoid arthritis. How could this be adapted for ME research? Would you sub in any other measures for ESR/CRP?

It's quite contradictory. First it says to listen to your body and avoid aggravations. Then it says ignore these signs and symptoms to increase activity by up to 20% per week. It also mentions endorphins as making you feel better, yet my experience of exercise is that I no longer produce...

Sorry for the necro. Do we have any reliable studies showing MCID/MID for the major symptom questionnaires currently in use? For instance, for the De Paul Symptom Questionnaire.

The guy is a sociopath, and a dangerous one at that.

FOIs are not doxxing. As far as I know, no one has published Sharpe's personal address online.

Maybe the food at funerals is supposed to speed along the reunion between living and recently departed?

I've also just remembered that some older studies suggested a small heart was common in ME. Could this be the cause of the heart pain?

Hi Phil, There's a list of UK places that do the testing here: https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/ (if you can run 5K, it might be easy for you). There's also info about the protocol in that thread too. It seems like it's pretty decisive in testing...

Very good point.

Same. My cognitive ability declines rapidly if I overdo it physically, and a quick drained sort of feeling sets in, with physical weakness and blurriness of thought. Speech is one of the first things to go, which is really frustrating if you're used to being chatty and articulate.

If it were, I couldn't tell you. Everything we discuss in meetings is confidential, I'm afraid. But as a lay member, I am encouraged to ask other patients (and carers) about the things that matter to them, and to follow discussions such as these in case they're relevant to NICE discussions.

@Suffolkres, this may be of interest:

Right. I Exactly. It does happen. People in positions of power are more easily able to abuse people and then cover it up.

It's all anecdotal. But that's sort of the problem of a proprietary training programme like this--none of it has been properly analysed or vetted, and the 'creators' have no impetus to share such information. It's in their best interests to keep it secret, which is a huge problem.

It's from Bristol local authority's own safeguarding/child protection policies. She checked those with a colleague. However, it's a key point in many policies for protection of children and vulnerable people more generally, so the point should apply wherever the research is conducted. The old...

Absolutely. I spoke to Christine and she was happy for me to quote this comment as she thought it covered the key safeguarding issue well. It's a solid argument to make. Obviously, there's variation in local safeguarding policies, but I founded a young LGBT writers' programme, which means I...