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Radio PSA "Get Informed" 60 Second Chronic Fatigue Syndrome Radio Script Transcript: SIC: Emotional under throughout. MAN: My memory is shot. WOMAN: My legs feel like lead. MAN: Every muscle in my body is screaming. WOMAN: So why does everyone think the problem is in my head? FEMALE...

I’m not sure whether ME Action would be a good fit as unlike with patients, they might not get a lot of donations from the general public to cover the costs of the ad.

Yes, I think there might be circumstances where that could be worth the money. By the way, people can complain about drug companies and their advertising, but sometimes I think the ads they pay for can be useful to highlight the debilitating effects of an illness as well as raising awareness...

It is not clear initially, but if you click on "comment" you can see comments on this article. The article involves some ad hominem arguments.

I'm all for more rigour in academia and research so am pleased to see when questionable practices are exposed.

https://areomagazine.com/2018/10/02/academic-grievance-studies-and-the-corruption-of-scholarship/

Maybe a bit off-topic for the thread but I would have liked a diagnosis of CFS over nothing during the 5.5 years before I was diagnosed. Having lots of vague and sometimes shifting symptoms meant I got little support.

Action for ME were using short videos in tweets recently associated with an appeal. People can share for free anything like that they like.

Somebody who was reading this thread noticed the entry for Kings College London and thought it might be worth highlighting the figure given for the PACE Trial e.g. on Twitter. As there seem to be conflicting figures given by different sources, I'm not sure I'll do it myself.

If one replies to the head of the NIH, a lot of people would read that as applying to the NIH budget: I agree that the worldwide situation is disappointing, though I think the relatively low level that has historically been raised privately hasn't helped, though it has been great to see big...

That reminds me: Canadian activists are looking for 80 something million dollars. I read in a National ME/FM Action Network publication recently that the CIHR gave $800,000,000 to grants last year. Looking for more than 10% of the budget, especially given how few researchers there are in Canada...

Three of these were used in this paper: https://journals.sagepub.com/doi/10.1177/1359105317697324

Regarding the tweet claim that we are getting less than 1% of what we should, that’s not correct. Dimmock and others calculated a figure of $186 million or something like that. 1% of that is $2 million.

I’m not convinced it says anything about the perils of conflating ME with chronic fatigue. The author could well have ME but not be severely affected or even if he doesn’t, someone with ME could go through similar circumstances. I was mildly affected by ME for over 4 years: if I had got a bit of...

I help run a charity that has a research fund so see what comes in. We have a few dozen monthly standing orders. A lot are from the long-term sick, moderate to severely affected. A few are from people who are mildly affected who are working. And some are from parents and siblings of the moderate...

Actions can have knock on effects. For example, GPs were found to be more sympathetic if someone in their social circle had ME or CFS. Get more people diagnosed and you can make the medical profession more sympathetic. So actions like raising awareness can have an “activist” effect. Though this...

But as I understand it from this and previous conversations, you want to claim that we are exceptional and can't raise money ourselves. However, the same is true of people with intellectual disabilities. And as you say the high functioning people with autism are unlikely to be raising money for...

For quite a number of conditions, patients are not likely to raise much themselves or find it hard to do so e.g. dementias, autism, other conditions that cause intellectual disabilities, probably some mental health conditions, terminal illnesses with short life expectancies, etc. I don’t see our...

I remain to be convinced the probability is high that a body like the MRC will give extra money to us because we claim we can’t raise much ourselves. If the illness is so bad, they could say/think surely between sufferers, family and friends donating and fundraising, leaving bequests, etc. more...