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Stakeholders will I understand be contacted tomorrow with news about additional appointments. I don't know what the content of the email will comprise entirely and can't say more at the moment. But the ME Association will be issuing a statement tomorrow when stakeholders have their emails.

More news from NICE about other committee appointments expected tomorrow (Thurs. 8th November). Anyone working on, or sending, letters might want to wait until then.

In theory, probably not in practice, the NHS specialist services should be seeing newly diagnosed patients. Therefore perhaps we need to think incidence rather than prevalence? However, in practice, I suspect the clinics also see people who have had a diagnosis for many years or who are...

Hi, I haven't shared this podcast on the ME Association's social media because I felt we should at least try and listen to it first. Your comments are very helpful - as is the transcript - so thank you. I have listened to some of the podcast, and wondered if anyone could possibly tell me why...

Greetings and apologies for absence, but as Nellie has said above, it's proving very hard balancing work and the demands of M.E. Dr Shepherd has been adding what comments he can to several threads on our Facebook page. I am afraid that until we have exhausted negotiations, sorted out whether...

I really appreciate the help. Thank you :)

Morning, Sorry to butt-in to the conversation, but can anyone who attended the conference tell me if they saw a presentation from a physician in Norway who talked about 'myoclonal jerks' in M.E.? I am trying to write-up Dr Shepherd's summary of the conference, but he didn't catch the doctor's...

Sorry, but I can't help. I have barely had any time to visit this forum let alone answer any questions in recent weeks. I am sorry but I have been working flat-out in the lead up to and during ME Awareness Week and then desperately trying to catch-up with everything in the aftermath of what was...

Aside from the fact we have been so very busy getting the message out in national and local press, on BBC TV and BBC Radio, on ITV etc. etc. We never had anyone from MissingMillions get in touch with us asking that we promote their demonstration on our social media platforms. If you've seen...

What do you make of today's press release from the authors of the Synergy Trial:

Morning, ME Association blog: http://www.meassociation.org.uk/2018/04/the-me-association-and-gary-burgess-are-pleased-to-announce-the-launch-of-the-me-show-23-april-2018/ We will be creating a dedicated website page for The ME Show and you will be able to listen to the podcasts from the...

Credit goes to our new PR manager John Siddle. He's really got the right contacts with the press and we have been trying to get the severe case studies we appealed for and received earlier this year into the press when and where we can. More is planned - as well as more general ME awareness...

Just to be clear. The ME Association did not make this complaint, but we do support the findings. Out of interest, what would be the most basic scientific study that practitioners such as Gupta could perform to substantiate the claims that are often made? Presumably, it would need to be...

Well done indeed. Could you point me to the information Healthwise provide on ME/CFS and CBT/GET please? I found their website rather confusing and couldn't see a search facility. Many thanks!

Here's the updated communication from Forward ME referred to in Suzy's post above and available on the Forward ME website: 9th April 2018: http://www.forward-me.org.uk/Reports/Communication%20from%20the%20Countess%20of%20Mar%20regardng%20BSS.pdf And the earlier document from 3rd April 2018...

One thing was betahistine hydrochloride for the nausea and dizziness. I think he'd prescribed it for others with M.E. as well, although my original viral infection seemed to be hitting my balance etc. through some nerve mechanism in my ears. Labyrinthitis was an earlier diagnosis pre and post...

He was the immunologist attached to the ME/CFS specialist service based in Truro. And patron of the local support group I was a trustee of for a while until he retired in 2010 (?). I always describe my visit meeting with him as a patient as a real turning point. He validated my M.E. and...

Hi Suzy, Yes. I caught your exchange on LocalME and emailed a reply. So it should be part of that group discussion. Thanks for your emails to me on this forum, I will try and read through them today and reply where necessary. Unfortunately, it's so incredibly busy at the moment it looks like...

We didn't actually hear from anyone who had experience of the inpatient service who was admitted with M.E. Here's the Facebook thread: You might want to speak with Simon Ounsley or Chris Oy as they are involved with the Leeds support group, and might be able to help. They both commented on...

Dr Shepherd is being interviewed for the documentary tomorrow. I've seen nothing that is of concern. The producers came through us to recruit case studies - young people with M.E. - last month.