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I'd love to be able to access acupuncture and massage on the NHS. It would be a thousand times better than cbt or get! If they can't treat us, why not do something to help us live with it, it might reduce the use of pain meds a little, which can only be a good thing.

30 minutes?? How do these patients manage it?

It's the definition of ME that worries me. If we continue with yet more studies with 'fatigued' patients who do not have clearly defined ME, then we will never get anywhere with research in this country.

Absolutely. I don't believe the CMRC's decision is due to a change of heart, it's more necessity. The patients were making it very difficult to secure funding with their petitions, advocacy and even a rather well known documentary.

I would expect said biomedical researchers to know enough to completely understand our reservations, knowing how badly pwme have been served in the past both inside and outside of the CMRC. I can't trust anyone explicitly, they were all prepared to work with EC on Mega, and SH still sings her...

Thanks Simon. I presume this list didn't have to be ok'd by Simon Wessley this time? ;)

Best quote of the day in response to Crawley leaving on AfME fb page Dawn Ward ''Bye bye Crawley, hopefully off to do 10% extra every week until she combusts'' :laugh::rofl::rofl::laugh:

Well that was so easy even I could do it!

Well, they do have male pattern baldness to fund :banghead:

Well done Gary, twice in one week! If you wanted an in-depth history to peruse at any time, this article is about the best ever written, anywhere, let alone in a UK newspaper. https://www.s4me.info/threads/time-for-unrest-me-article-by-nathalie-wright.1813/

I've needed at least 9 hrs sleep since I got ME just to function at all. I do take sleep meds though, without them I wake up after 3-4hrs. PEM causes insomnia initially,followed by several days of sleeping for over 10 hrs. My sleep is now messed up by thyroid issues and I can now sleep for...

They are no better than Nazis. I am so ashamed of my country.

Sometimes people just need to vent, there is so much hurt and pent up anger from the medical neglect and injustice. You will be shocked and horrified when you hear of many of the horrors endured by both adults and children. The suicide rate is beyond shocking, due to having no hope for anything...

A very warm welcome to S4ME @Gary Burgess it's great to have you here with us :) I thought the show was great, though a pity that the question was not answered. Maybe ask our very knowledgeable prof @Jonathan Edwards to appear next time? Wishing you lots of luck for your forthcoming wedding...

Of course :hug:

Oh wow, that's fantastic news Liv! :woot: :hug: :woot: Well we'll definitely be there, the location sounds wonderful. I have just listened to the choir on youtube, very beautiful and moving, brought tears to my eyes.

I'm registered there and had to have initial appointment with a GP from their partner surgery to get prescriptions. I don't think he believes ME is a physical illness, though he was very careful not to say it directly. Decided to refer me to pain clinic without knowing anything about me, my...

I wonder how many of us avoid talking about ME with GP's and consultants?

Wow, wasn't Carol fantastic!

And Crawley calls it post exertional fatigue :banghead: