Search results

I wonder how potential participants/patients in this project were identified?

How true this is.

Sexism aside, AfME are reinforcing the point about the need to take control though. If it can be done in a cohesive way, even if there are several different approaches/threads to it. The largest UK charity (I'm not going to call them a patient charity anymore) are clearly putting a government...

And our charities should be making clear there is a huge difference between a) being ill with an on going condition that can be made worse by exertion where there is no effective treatment. b) being long term disabled with a fixed disability, who will not be made worse by exertion as long as...

It is completely irresponsible information to give to ME patients and anyone who comes in contact with them. In my own experience, despite being diagnosed as having severe ME, by an experienced consultant, the powers that be constantly just ignore the word severe. It's been like being caught...

And then, of course, we also have the biggest charity AfME who seems to actively work against patients best interests at times.....

That sounds very useful.

I think given the current dire lack of knowledge, combined with the very bad information being spread by the likes of AfME GPs also need to know enough to be able to tell when their patient is being put at risk by bad advice - and be prepared to protect their patient, if necessary. Edited- our...

I also dislike the bit where they recommend reviewing the patient's preferred terminology to describe the illness and the symptoms prior to each appointment and to use the preferred terms during the appointment. It smacks of manipulation....

I agree with what you say. However, I think the PR side is also very important. Why wait until validation trickles down from the medical professionals? In the modern age of social media and the like we could, and I think should, take a multi pronged approach. Getting the medical...

I'm sorry @Hip, but reading through it does rather seem as if you're trying to play both ends against the middle. It seems very unclear to me. In that case I will leave it there. I'm not going to spend further energy on it if the conversation is closed.

I'm not sure what, exactly, an internist is. In the UK the GP would refer to a specific clinic or speciality - endocrinology, cardiology or specific clinics such as family planning or.....IAPT. I can see where you're coming from @Michiel Tack, but in the UK these clinics are pot luck and, if...

I am unsure where Valerie is going with this - especially the sexism angle, but I think we do need to change our approach. As it stands, as a community, we are always keeping our fingers crossed about how we will be portrayed in the media, then when we are unhappy we're on the back foot. We...

It might still be possible. If you were prepared /able to get a copy of your own records and pass on the information they required.

Among the things I would would like to know: Names and experience of clinicians Names and experience of employment advisors Numbers of ME patients. Who diagnosed the patients and what criteria did they use? Ages of patients How long had patients been ill? How severely affected? How many...

They say that the toolkit is based on the evidence, experiences and outcomes of the SEE M.E. service. Data please.

Also, it doesn't seem to mention anywhere that once the "client's" confidence and self belief has built up to enable them to tackle the challenges of returning to employment , they may well/are likely end up far more severely affected later on. And this is supposed to be a charity working for...

Some good comments below the article. This continually fighting over every tiny scrap of care that people need is so counter productive. Especially with conditions where the effort involved in trying to deal with the authorities exacerbates the underlying condition. Ultimately, it seriously...

Sorry to be so negative, but based on some of the guff they've come out with before.... This just makes my heart sink. Edit - had a scan - reminds me of IAPT - a person's clinician and employment advisor in close contact about you. Although it acknowledges in the front that "some" people...

So, by this logic, do you agree with Wessely, Sharpe and White that ME/CFS is a psychological condition? I'm afraid I find your summation of the qualities of various professionals and the reasons they might be drawn to their chosen fields very oversimplified, @Hip. Some people, such as...