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Does it really or do PWME use more "something" to support larger muscles than they need for what they can do? I didn't find it less tiring to do things when I had larger muscles.

There was this old paper by Reeves et al, However this is the infamous Wichita cohort. https://www.ncbi.nlm.nih.gov/pubmed/16740143

I'm not sure if Professor Brostoff is still interested in ME issues but he could be another possibility maybe?

The petition and publicity seem to be trying to tackle trolls who attack individual disabled people. Yes, that is bad and many of us would have received attacks on the level but we need to be protected as a group in order to fight the PACE /SMC etc (as in a hate crime against race etc). I've...

This looks like "PEM" as a Lifestyle problem. How can food as an example cause PEM in a sizable group of well defined patients? The examples are dreadful

I'd like to see a study on Celebrex alone to see what effect it has and another group taking the combo to compare exactly where the differences are (if any) My experience with Celebrex and an antiviral (I've tried several) is that it does have better effect for me when they are taken together...

Last time NICE sent out a message inviting patients to apply for the 3 patient rep positions. There was a form from memory to fill in.

She could maybe ask the Duchess of Kent what it was like being mis-diagnosed with ME when she had coeliacs disease Reports by the BBC stated that the Duchess suffered from coeliac disease and Epstein-Barr virus, whose symptoms resemble those of ME or chronic fatigue syndrome, while the Mail on...

"Dr Groves decried the "awful behaviour” – in this she referred to a couple of attendees in the audience (severely affected ME patients) who heckled her when she began to praise the PACE Trial." http://www.investinme.org/Article-504%20BMJ.htm I was there and the audience behaved very well...

Patients who attended the National Hospital in London and then reported back to their support groups knew. From my memory of the time the Ean Proctor story was well know by patients. I'm guessing that it was featured in the MEA magazines at the time or local group newsletters. That was around...

They think that the end justifies the means. Their colleagues cannot possibly be harming patients. All those poor children with no champions. It really doesn't matter what dodgy therapies are used if it gets them back to school. It's a case of convincing them of what will do them good and with...

Hence the very old saying about him 'weasel words'

I have a dim memory that the VP1 test was abandoned in part when the MEA collected results from their members and based on the low positive numbers declared that it wasn't effective. Someone like Dr Shepherd may remember. My blood results went to them. It may have been politics and I guess...

P.s. Just. I also had an unexpected good result to the test. Normally my morning symptoms are nausea/vomiting, weakness, fainting but within a few minutes of the injection this lifted. On a normal early morning hospital appointment with no food I would have felt awful. The Endo I saw...

Hi Erin. My experience was that the test went well and I had no bad effects apart from the awful post exertional problems of attending a hospital. It was an early morning appointment and an almost total waste of my time as the NHS Endo wasn't interested apart from ruling out Addisons disease I...

I'm not entirely convinced that anyone recovers from using the LP from anything. There is another complication. A family member did a similar program to the Lightning and part of the brain washing was to convince the PWME that they really were well again. She never went back to her old job after...

This strikes a chord with me as I see Prof David Peters has his ex-job as a GP in the Marylebone Health Centre mentioned in his blurb. This is a UK NHS GP surgery in central London and I was once a patient there. This is the medical centre that wouldn't treat my chronic sinus problems as my GP...

I was going to suggest that as many patient reps as possible meet up before the meeting or set up a closed email group to discuss the workshop. The former may of course not be possible as just getting to the workshop is going to be hard for many. This is not a time to go into negotiations...

It seems to have been recorded before the sad announcement about the Rituximab study

It's more than that - it's the whole politics about having child with down's syndrome