Search results

Same. My body and circadian rhythms get really messed up and it can take a while to recalibrate. It's not easy when trying to have the minimal contribution to family life. It's rubbish for families with young babies too. We don't exactly send kids and everyone to harvest the fields and...

It really is the same old crap. A good point about the old movers and shakers. However much they railled against just criticism, they won't pop their heads above the parapet. God knows what happened to Esther Crawley but it does seem some are happy to align themselves know with the new Long...

There are quite a few typos on the site. But it's easy to miss when your constructing the whole thing. But it should be run through a copy check at £43K! Logo and branding is very skilled work. It's simplicity and complexity but it's vital for credibility and non verbal communication. I can see...

Sure it's on their website https://www.actionforme.org.uk/our-new-website/

It might well be a mix. There's different phenotypes in both conditions and one root cause or pathology might be difficult to gauge. Viruses have some involvement, but whether it's persistence or some immune process viruses trigger - more research is needed. There is some research on biopsies...

There is some comment on the conference here. Mainly on the overlapping with BACME and the Bath Clinic with Jo Bond Kendall. Long Covid charities look pretty involved with the CPCS.

The website is better organised but not sure on the new logo. It all cost £43000 though - which is a lot. But maybe that's what branding and websites cost these days?!

I've found that having the cheap as chips silicon ear plugs that have 3 tiers in are really handy. I basically keep them in most of the time, but i can push them in or balance them in the ear depending what noise is around me, it's a non techincal sound adaptive system that has helped me feel...

Spotted a book club on Goodreads. First book looks at pseudoscience. Info from page: "Hi and welcome to The Pedantic Zebra. The quarterly book club (audio or text) where we learn alongside each other about illness, disability, systemic injustice, the treatment of women in medicine & medical...

For the patient, in a therapeutic context body mapping might well bring some benefits. But you'd also need highly trained facilitators to deal with the trauma of having the condition & being neglected. But it's aims of being a new way to get drs to believe you and take you seriously is likely...

If it's just considering a donation front a significant amount of donations to charities is actually legacy funding. So when people die they donate houses, stock, larger sums. So diseases that affect the older population or a high mortality rate are better funded. Yet with the chronic and...

Not specifically for ME but the CLoCK study in children for Long Covid assessed behavioural and psychological states pre covid to try to do the same thing. There is substantial questionnaire data on this in their papers.

Great post Trish. Pacing up does seem to be a rebrand of GET and differentiated because it isn't a set graded process. But it's still asking people to magically do more without any treatment to address the disease. I just don't get why we are expected to just do more and our bodies will comply...

Good points @Nightsong - there are definite cross overs with some of the dodgy MECFS researchers of the past. Segal is involved in the Long Covid CLoCK study and has history trying to blame mothers perfectionism in ME in children. I think Sivan supervised a Masters study in 2021 looking at...

Garner has the fanaticism of an over zealous convert - it's not normal or helpful!

Thanks @Yann04 for including their responses. Interesting, but it doesn't seem any of them have any experience of severe Long Covid or ME. Blimey hope they aren't going to be doing a severe ME leaflet! I'm not sure they realise that the term PESE was to avoid it being reduced to exhaustion...

It does look like the Post COVID Society is based on a BACME model. They are both presenting at each others conferences and strongly invested in the rehab model. Not sure why SOS have rehabilitation as part of their tag line?! It's very out of date and has problematic connotations. Has a look...

Had a quick peak on charity commission and they were registered in May 2022. Getting charity status in June 2020 would have been superhuman! https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5190647/governance

One other option is it could play into fact checking? ME Fact Checking Fact Check ME Full Facts for ME The Full Story for ME

It's a good point @bicentennial about alienation. It's not the best start for a charity. But it does look an an opportunity was taken by someone with an agenda to muddy the waters and perpetuate the PR that ME activists are 'troublenmakers' I suppose the question is how much this has coloured...