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Ah now. Be fair. ;) It's not like any old anecdotal evidence will do. Patient surveys by multiple national charities but not saying what they want to hear? Nope - you know what those anti science, militants are like! Patients filling in forms they've more or less been coached in who are...

Frankly, I think this appears very unprofessional to my eyes. They know that a number of the stakeholders are ill and yet the stakeholders have had to comply with deadlines imposed by NICE if they wanted their submission to be accepted. Stakeholders and volunteers who are ill.undertook their...

It highlights the absurdity of the whole BPS school. By the same token those who suffer a more severe form of any disease just need to want to change. The same logic means those who die of cancer, or covid simply haven't had the right mindset because look at all the people who survived...

:laugh::laugh::rofl::rofl::rofl::rofl: For some reason that put me in mind of Vogons.....

Maybe he isn't? :whistle:

The ultimate insult.

The old double interpretation con always works a treat. A question that the patient can interpret in several ways. If the patient answers it the wrong way then the therapist can interpret it in the way that best suits the clinics goals. An excellent con worthy of the double glazing industry...

Well, we don't know for sure that they are consulting lawyers and even if they are they are perfectly entitled to. It's the fact it's so blatant that patient interests come a very distant last in their priorities. This should undermine their credibility & yet they seem confident that it...

Well done for standing your ground @daftasabrush - it can be tough standing up to the kind of pressure they'll exert. This is why I fill in the forms but in such a way as to make them useless, otherwise they'll try to fill it in for you on the spot. That's even worse - as they'll rephrase...

Useful list, thanks for sharing. :thumbup: I was interested to see a number of dishes that trigger a reaction in me seem to contain a number of ingredients that are high in histamine or are liberators. Due to other problems I ended up eating very simple dishes basic ingredients and that has...

IM had a little tenderness around the injection site, both to touch and he could feel it when he moved his arm around. He chose to have it in his left arm as he's right handed but he sleeps on his left side so it was a bit uncomfortable the first night and he tried to sleep on his other side...

Definitely. They show absolutely no compunction about openly contradicting themselves as long as the outcome is the same. They get to control what "care" someone gets. Most usually denial of care if it's any other discipline than psychological medicine.

:thumbup:

From my own personal experience I would say high. I fit the criteria for ME and had the diagnosis confirmed by more than one specialist and yet, I have also been told I shouldn't have the diagnosis because i also suffer from a couple of rule out comorbidities. I have met people who told me...

And how are many of them supposed to know?

I'm probably going to upset people by saying this & that's not my intention but...... On the one hand, one of the best pieces of advice you could give an ME patient in the early days is to rest up. Enjoy doing what they can when they feel able but be watchful for patterns - like the 3 day PEM...

I don't know if you've deliberately left it out for fear of muddying the waters @FMMM1 but during the PACE trial participants were issued a newsletter that basically told.them the GET & CBT were effective treatments. Given the trial ditched the only objective measurement and relied mainly in...

I'm not sure that is strictly accurate. There were a series of small previous trials on GET & CBT. They were underpowered and all faced some criticism I believe. The NICE (2007?) guidelines predate PACE (2011?). PACE was the trial that was supposed to finally settle the GET &CBT question...

Yeah.....poor misunderstood Sir Simon.

Curious. For someone whose measure of function seemed to be purely bums on the school seat approach this seems to be the opposite. A sibling of mine had "grumbling appendicitis" as they became a teen. Several episodes of time off school - not all requiring hospitalization, several hospital...