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I should not be on this thread as its upsets me but I read today on Dr. Hng's facebook page that MUS clinics are currently being rolled out across the UK. And ME is part of MUS. Is that freaking anyone out??? I haven't read the thread as I have no energy so apologies if this has been discussed...

@Gary Burgess thank you so much. It is great to have you on board and that you are willing to speak out for us. We face massive injustice and stigma. Thanks for bringing hope.

I am relatively new to all this BS but really, is there ever a day we get up to some good news. Sounds to me like Julia Newton is lacking back bone, she could have done alot today but she didn't, she played it safe. Opportunity wasted.

Maybe she should realize that bad things happen when good people sit back and play it safe rather than tell it like it is. Ah sure, what's another few decades of suffering...

Jonathan, if you phoned in and said exactly that, it would be gold dust. In fact if anyone posting here based in UK phoned in and said some of the harsh truth, it would be gold dust.

Deadly!! Pineapple is a godsend

You echo my sentiments Madone. I am skeptical but a little hopeful too.

How can they make money from us?? If this drug doesn't prove successful in trials, none of us will be trying it.

It was cancelled so you missed nothing! No date yet for rescheduled webinar

I am not saying they are owed anything, the fact is they can totally disable patients with ME with GET. We need to be separated from other fatiguing illnesses asap as lives are at stake, especially those of children. We are fighting a battle for ME patients, not every fatiguing illness under the...

I am no genius but if they use ICC or IOM criteria and have PEM as mandatory, that will ensure ME patients are researched and not mixed in with other fatiguing illnesses. I feel numbers with ME are grossly exaggerated. The psych brigade can still play around with other variants of fatiguing...

Why can't those of us who are functional enough take to the streets in protest. I would fly to the UK and go out in my wheelchair if there was a protest organised. We can discuss it to death here and who the hell is listening?? The more I read, the less optimistic I am about the NICE update. We...

Why have we so many possible biomarkers yet nothing translates into real world medicine? I know studies need to be replicated but how come we never seem to move on one step further? I am glad to hear of Naviaux's replication study but it doesn't seem like something that could be transferred to...

Great Emily, looking forward to updates!

That is so lovely that Anne will be remembered.

Fucked up sums it up perfectly Alvin, mentally and physically.

How common is ME/CFS, nobody knows. I think the estimates given are huge exaggerations of the real figures. Certainly in my country, it is not a very common illness. If it was as common as its supposed to be, more doctors would be seeing it in their practices. My gp has never come across it and...

I was a blubbering mess at the end....what a gentleman

Moving forward thank heavens,

She says that they have hired coordinator for CFS trial and it will start early next year as in 2018. I don't think we are waiting on results from Gulf War Illness trial, at least that is my impression. Maybe it's a small scale pilot cfs trial but I believe it to be 2018. I think we can second...