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:laugh::heart: I hope you are enjoying it :) I meant that the issue is that the problem of there being no sufficient clinics to study the condition (and be able. To give advice on what works and prognoses and do research) got ‘reframed’ to the problem being the patient. Instead of being seen...

The irony of on another thread trying to explain how commissioning boards have GPs as staff apparently in order to be able to spot gaps in provision. Vs the guidance sent to them [partners who’ve learned little about the condition and are already incredibly busy] directly in the past and...

It would be interesting if there is any research comparing occupational outcomes and support for me/cfs vs other conditions properly longitudinally. I’m brave enough to suggest the old guidelines had potential to infer things like CBT might be a cure all for me/cfs when reducing hours and...

“You won’t take away my toy” why are there not rules in advertising and misinformation for the one area that it is the most important out of any? what is the sickest thing is the fact these people think having a certain tone means their intention is to help even tho as these things offer no...

Shocking really the gravy train just carries on pretending it never happened that it was confirmed CBT doesn’t treat ME/CFS and isn’t effective for it in any mode I read this in the hope it was a sane person talking about those needing depression support that wasn’t ‘reactive’ or ‘situational’...

Agree and as a collective there could have been decent record keeping so we weren’t bucketed with other conditions and later additional comorbidities and misdiagnoses were logged. Along with being approachable enough people felt safe if they were kept an eye on to see prognosis be more accurate...

So articles ‘discussing’ whether hate, human rights and coercive care for the disabled need to be ‘balanced with clinicians judgement’. And then an article suggesting a clinicians judgment should be able to be more independent of clinical trials? Is this the same one whose main area is Electro...

Oh ffs mental health is in reverse. The days where osychology noted a support system and having good relationships where people listen was what made the difference, so it could replace with toxic positivity etc suggestions that people make someone self conscious by pathologising or over...

Although I’d start with the website first. Its simplicity works well to get the penny-drop of PEM across which then transforms how people see everything and is a good base to read more detail from?

It is in the realms of just a mad manifesto for misogyny. I mean there’s no science or analysis it’s just a propaganda based rant against people they don’t like for no well-justified reason. Then telling made up angry stories to try and incite others. The sort of thing that if you write it and...

I think if you are using time points that are properly longitudinal eg a year plus to see if a treatment worked or you are pushing through on adrenaline etc my most recent doing too much I’d say the less you just overdo it sadly the longer you do it fir and it can be six months then you realise...

I totally agree , apart from when I’ve over exerted I can end up spending whole nights needing a wee every 30mins sometimes less. Eventually of course this all resolved into a crash out stage. But I’d like to feel reassured patterns like that can be separated out because I’m certainly ‘not good’...

Important things raised @Kitty and of course you’ve reminded me of the other issue: using intrusive or presumptive questions and titles is a great way to filter the sample to those who agree that it was eg their obsessive tidiness mindset that triggers their ingrown toenails.

I use the term callous indifference or wilful ignorance for the determination you get to not hear but focus on man not ball arguments to prove oneself right rather than seek to learn anything that tends to be the response of too many there’s that wonderful delusion people can wrap themselves...

I can’t cut and paste on phone but on that last paragraph you might want to go to the ME Association PROMS thread with Sarah Tyson and Pete Gladwell and scroll back a few pages to where survey 3 was released with new terms and conditions- which seemed to specifically include not being allowed to...

A lot of them aren’t real psychologists anyway but nurses, physios, ‘CBT professors’ without the broad psychology that looks at whether either CBT is the right treatment or what it’s instituting as thinking is harmful or unhealthy just whether it’s effectively instigated (unlike the way ‘proper...

I think there is a survey or questionnaire (from my memory might be a london clinic?) that asked children questions like ‘do you steal things’ that’s one of the more recent issues ? which is of course pathetic behaviour of both writer behind it and shows how much ethics boards have gone to the...

This is interesting because another question to ask is just how limited is the input as a whole on anything to do with ME/CFS in this area? I say this because I happened to come across the following: Myalgic Encephalomyelitis (or Encephalopathy) / Chronic Fatigue Syndrome (ME/CFS) - British...

I was hopeful when I saw the title that someone had finally grasped the nettle and started investigating the psychosomatic researchers. but instead we have this which focuses on the hypocrisy of the ideology. First rule of fight club: but when we get ill we expect to be treated biomedically...

Interesting that PD White is one of the authors