Briefly because I have other treatments currently in progress, most of the above apply to me apart from my husband and daughter raising money via...
I knew my CRP had occasionally been logged as abnormal then returned to within range. I just reviewed my levels in my GP record and noted that...
There is still something unrecognised that creates suspicion about an ME diagnosis. I have just returned from the GP's, not one I usually see, and...
I still use several techniques to try to reduce infection but I'm not sure that I'm being totally consistent. I still like anyone who visits to...
I am glad that you have had your surgery done with the best chance of a good outcome. I hope you continue to be well. Do you mind if I ask what "...
I like the word scrutiny. It implies detailed inspection. Scrutinising ME/CFS? edit: Oxford dictionary "critical examination or observation"....
That's fine @dave30th. It's not as if they're going to change everything is it? How can so many words be written and things stay the same? Merry...
'Like' button pressed. Thanks for raising this @boolybooly .
Do we know how many members there are? Have we seen the list of the minimum of 20 members? I wrote to my MP who wrote that his team would apply...
I'm sorry if my last post was a bit abrupt. It has been a tough couple of days for us all in the ME world so it's time to stop and try to rest.
But that is how some of us got our diagnoses of these illnesses. We described our symptoms and lived experience to a specialist doctor and were...
And now dated 2024. This is just mad. Do they expect to get away with it? Of course because they have got away with everything else, apart from...
I agree Peter. Cochrane have no wish to communicate constructively with the patient or scientific community. edit: if I were to be in a position...
Yes but since all the complaints so far have been ignored anyway, I'm not sure the situation has changed. I feel disinclined to jump through...
Thank you @Medfeb for the email.
So it looks as if the role of the Independent Advisory Group was to cover Cochrane's back while they decided what to do.
Would be interesting to know the projected timescale for this study.
The info on the SequenceME thread. " The next phase, involving sequencing of 10,000 participants, requires £7 million in funding" .
How long will this take?
Great letter. Thanks so much to @Peter Trewhitt and @Trish Davis for doing this.
Separate names with a comma.
