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Just to reiterate: 81 young people who have had one or more symptoms persisting for more than 12 weeks, with over half moderately to severely disabled. Some months (around 3) later, in a phone survey, there are the following reported results: 26 (81-55) young people, status unknown - 32% 16...

And one more thought. Not to diminish the considerable contributions of the ME/CFS representatives on the NICE Guideline committee, but I think its true that there would not have been a chance of a good outcome if there weren't senior 'establishment' and NICE people who were willing to allow...

Nice comment on the petition site @Peter Trewhitt. Thinking about this, this afternoon, I am wondering why those representatives on the IAG and in the writing team who are there to represent the interests of people with ME/CFS are still sticking with the process. With NICE, with IQWIG, with...

It is a weird event - there's those three speakers who might have something useful and new to say. But it feels a bit as though some organisations are aiming to gain credibility by being near them. The event sponsor is the Foundation for Total Recovery https://foundationfortotalrecovery.org/...

PETITION UPDATE 30 September - Cochrane has replied - but don't get excited yet SEP 30, 2023 — We wrote another open letter to Cochrane yesterday, 29th September, emphasising the need for urgent action. We have today, 30th September, received a brief reply from Cochrane to the open letters...

PETITION UPDATE 30 September - Cochrane has replied - but don't get excited yet SEP 30, 2023 — We wrote another open letter to Cochrane yesterday, 29th September, emphasising the need for urgent action. We have today, 30th September, received a brief reply from Cochrane to the open letters...

Thanks @Ravn, the archive link worked for me. But, ugh. For goodness sake. The illness that seemed to start my ME/CFS and that of my two children didn't have us lying in bed for weeks. For my son and I, who still have ME/CFS 10 years later, it didn't even have us significantly changing our...

They seem to be saying that their model is of 'metabolic PASC', so it's not of ME/CFS - Long Covid.

The Pacing and Rest section In common with lots of resources about Pacing, this one misses the important point that a person with ME/CFS has to make hard decisions about how to live their life. Do they stop trying to go to school and study from home? Do they reduce from full time work, to...

The PEM section I get the feeling that this was written by someone who doesn't have ME/CFS. It hits a lot of the marks that we would want to see, but it also misses some. Crucially, it seems to focus on fatigue, whereas PEM is much more than that. See for example this first paragraph in the...

:D Praise of a moderator is never off topic. I think that's a rule? Anyway. Thanks Michelle, S4ME only works because lots of good people, such as yourself, contribute.

As per that last post, Solve have been helpful in promoting the petition, and we are talking with them about the letter. Decisions understandably can take a while, especially in larger organisations. But yes. Maybe many US advocates have focussed on other important advocacy targets and aren't...

Thanks also to the World ME Alliance and Solve M.E. for promoting the petition e.g. Solve's Facebook link, the World ME Alliance tweet.

Thanks very much for promoting the petition Tom (and yes, for everything you do in advocacy) and to the kind person who has given the petition even more exposure on Tumblr. And more good news - the ME CFS Foundation South Africa has agreed to support the campaign. Thank you. www.mecfssa.org...

Update posted on the petition site: 28 Sep 2023 update - over 30 ME/CFS organisations call on Cochrane for action SEP 28, 2023 — In less than a month, nearly 8000 signatures from 64 different countries At the time of writing, 31 ME/CFS and Long Covid organisations supporting the open...

Tack! to RME Östergotland in Sweden for their support for this campaign.

Sounds as though the event organisers have ME/CFS and fibromyalgia, and quite a bit else, all sorted - mechanisms, treatment...

We've made an update on the petition: 28 Sep 2023 update - over 30 ME/CFS organisations call on Cochrane for action SEP 28, 2023 — In less than a month, nearly 8000 signatures from 64 different countries At the time of writing, 31 ME/CFS and Long Covid organisations supporting the open...

Oh yes, I'd forgotten about the label of 'flat affect' that is often thrown around. A number of us have made this point before, here's me saying this previously:

Another thing I noticed over a day of being hooked up was that my fingertip oxygen saturations would often drop to 92% before heading back up to 98 and 99%. As I say, other stuff was going on, but it seemed to be a bit consistent with the limb numbness that I get really easily and our...