Search results

Social economic status can change from having ME/CFS, much more often going lower than higher due to decreased economic productivity from the patient working less or not at all and other household members often having to do unpaid labour. This effect could be larger than other conditions on...

Thread on the US Household Pulse Survey here US: Long Covid prevalence from Household Pulse Survey

Emerge Australia press release https://mailchi.mp/emerge.org.au/stop-rest-pace-march23-1339285

Merged 1. until May 12 The National Academies of Science, Engineering, and Medicine (National Academies) Committee on Examining the Working Definition for Long COVID invites you to participate in a questionnaire about how to best define Long COVID. Results will be reviewed by the National...

Ireland: https://denisnaughten.ie/2023/04/20/long-covid-rates-have-increased-by-4-in-four-months/ He’s a member of the Irish parliament.

For what it is worth: Doesn’t mention ME/CFS except in listing what company does: PaxMedica Announces NASDAQ Closing Bell Ringing to Celebrate Initial Public Offering and Autism Awareness Month...

What I would like whenever the figures come out is a breakdown showing that the numbers have decreased in recent months and that people can’t simply assume the target will be reached by the deadline. DecodeME don’t explicitly need to say the target isn’t heading to be reached if they don’t want...

Source: ICanCME Research Network (Canada) Date: April 18, 2023 URL: https://us6.campaign-archive.com/?u=17faa36a9bf5a8f4dd75a5de6&id=c6843b0abf 2023/2024 New Frontier ME Discovery Grant Program ------------------------------------------------- Call for Proposals. Deadline: Proposals must...

Free fulltext: https://www.researchsquare.com/article/rs-2642799/v1 Background: There is a dearth of research to support the treatment of people with Postural Tachycardia Syndrome (PoTS). Despite expert consensus suggesting exercise is recommended for this patient group, there are no...

I imagine this has been discussed in-house: ME awareness month/week/day is a time the local and national media can be more receptive to coverage of ME items including potentially this one. Also individuals could potentially help with this, writing to local media to say they were taking...

I thought this made some good points. I think the points about the Science Media Centre could have been strengthened by linking to their often very biased press briefings particularly older ones (e.g. IIRC the one for the PACE Trial in the Lancet was very uncritical).

(Off topic) That reminded me of this: I've discovered that I have a superpower. I can melt ice cubes just by staring at them. It takes a while though. (Boom boom, as Basil Brush used to say)

The importance of some pacing is even recognised in, for example, the PACE Trial manuals for CBT and GET. The denial of supports (payments, disability aids, disability accommodations, etc.) that is recommended by leading BPS proponents actually makes careful pacing and energy management (even...

OK. It’s from a PhD, actually done on pacing and ME. Getting acknowledged that she is Dr Goudsmit comes across as very important to her so I thought it fair to highlight.

Dr Goudsmit (I don’t agree with everything she complains about but think she has a point when complaining about this, which some people seem to have done deliberately).

No, it was something I copied from elsewhere.

There was an imbalance for a period when the MRC wasn't funding any biomedical research, though it was still paying for research. But it would be not correct to say that other illness communities don't have to raise money privately for research, that taxpayer funding pays for all or even most...

The two tables I posted above of successful and unsuccessful grant applications were created by the MRC itself and released following FOI requests.

There may be a useful quote or 2 in this --- Inquiry into the status of status of CFS / M.E. and research into causes and treatment November 2006 Group on Scientific Research into Myalgic into Myalgic Encephalomyelitis (M.E.) http://www.erythos.com/gibsonenquiry/docs/me_inquiry_report.pdf...

(from http://meactionuk.org.uk/The-MRC-secret-files-on-ME.htm ) As Dr Jonathan Kerr, Sir Joseph Hotung Senior Lecturer in Inflammation, Department of Cellular and Molecular Medicine, Hon. Consultant in Microbiology, St George’s University of London, stated at the Invest in ME Conference held...