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Since membership of S4 my heart sinks whenever my own GP says that, & yet my carer & everyone around me says 'oh well they know'. They dont.

I know Dr Charles Shepherd had a muscle biopsy done, i think in the 90s, that was abnormal in some way, but i dont remember the details.

thanks for doing that. It'd be amazing if they got someone good. But i'd say thats almost certainly not what is being looked for. I'd say what is being looked for is someone who already believes in, is a huge fan of, and uses GET in the practice "working with" CFS patients. Someone who knows...

Replace the names Younger & Komaroff, with BPS fanclub names, & LDN with GET/CBT & we have heard it all before. Whats the difference. Physicians need to stop telling people that because a few of their patients improved *after* taking/doing whatever, that it means that whatever it is 'works for...

are you in the UK Dom? wondering how you do that?

absolutely. havent i read that the more times you get infected with covid the more likely you are to get LC? Another issue is getting an infection, feeling a bit crap after it, snd experiencing mild forms of PEM after cumulative 'overdoing it' over a few wks. Repeatedly pushing through because...

and if drs can be persuaded to remember to suspect sepsis... in order to use it.

Ah i see what you mean @Sid yes perhaps you're right. just so used to hearing them say we're attention seeking i read that into it. But what i said about the fear/avoidance still stands. I do resent the 'take to their beds' trope in any case - people rarely go to bed if they arent forced to.

:banghead::banghead::banghead::mad::banghead::banghead::banghead: This idea that PwME are 'taking to their beds', in an 'attention/fear avoidance cycle'... Oh bugger off. I may well have psychiatric illness, we dont yet know what causes ME/CFS, but its not 'fear/avoidance' or attention...

the thing is though that graph only goes to June 2023 & they warned they were stepping up reassessments in sept More WCA reviews to be carried out, DWP warns (benefitsandwork.co.uk) I agree it certainly looks like the number of reassessments depends on number of new claims, there seems to be a...

Brilliant thanks, a big well done for doing it. Ah well as long as B&W are aware of it they can tell their people/commenters themselves. Its been interesting to read some of the comments on their news story about this. There seem to be a couple of people in same position as me with a...

Do you have a link to the FOI result please @BazzaBoyle ? or perhaps that would be too personally identifying? - not sure how these things work never having made an FOI request. At any rate I hope you'll be able to let Benefits and Work know? so they can put people out of their misery. I've...

exactly this, particularly when such terms are not exactly mainstream.

:rolleyes::rofl:viewed by whom? its certainly not viewed as that by the vast majority of the medical profession, in any country afaiaa. And if they mean viewed by patients as that, then i'd suggest that patients' insistence on a 'neuroimmune' paradigm (with insufficient evidence to support...

i am feeling very grotty cant really understand anything other than the first sentence (that i bolded). Couldnt the explanation be that perhaps infectious onset ME is a different biological/pathological beast, than non infectious onset..... ie look similar but actually not, and non infection...

they make me laugh talking about 'social safeness'.... i dont know about you but a massive aspect of social unsafeness i experience is caused by all the problems that this BPS twaddle generates

yes i can see see that - i only have it on my face & neck & thats hard enough & i have carer help! I dont birn easy except on face/throat & am never out for more than about 30mins anyway & never on the hottest days so i dont put the thick 'children's waterproof' stuff on the rest of my body, i...

I have found a way to improve the removal... Once you've wiped off the excess with a dry cloth - Get some oil (i use coconut oil) & massage it into the area, use plenty & massage it in well - so it forms a gloopy greasy mixture with the remaining sunscreen - the aim is to mix the screen & the...

Theres a thread about it here Who was it that said being in support groups leads to poor outcome? | Science for ME (s4me.info)

This pretty much perfectly reflects my opinion and experience thank you Particular emphasis on this