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I think much of the problem stems from the fact that the medical profession is very reluctant or unable to carry out quality assessments on itself. In my own career there were built in quality checks. Any report would be QA'd by a minimum of one other person of at least the same technical...

You've emphasised 2 very important points for me @Hell..hath..no..fury... 1) false hope is, in a way, worse than no hope at all. At least if there's no hope you can adjust and make the best of things. 2) life is lived in the little everyday things and when you sacrifice those in the false...

Years ago I met an MS patient and as soon as she discovered I had ME, she told me she had only been diagnosed with MS for less than a year and a few years before that she had been misdiagnosed with ME. She told me she was hugely relieved to have been rediagnosed with MS, her quality of care...

As far as I'm concerned, after the SEE M.E project, AfME can jog on.....

Also @Action for M.E. ... if you were providing advice on behalf of the DWP, were patients/claimants provided with any independent sources of advice? ...if the clinic, DWP and the charity supposed to represent the patient interests were all working together, what steps were taken to guarantee...

It would be very interesting to know. AfME provide support and (unless I'm mistaken) have a telephone helpline for members to seek advice in living with their condition and also seeking advice on filling in DWP forms....

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.