UK CMRC 2018 Conference Dr Nina Muirhead

I see Dr Muirhead was at the last Forward ME meeting:

http://www.meresearch.org.uk/news/forward-me-group-minutes-17th-july-2018/

From the minutes:

Nina went on to explain that she is a NICE stakeholder. She was thinking of suggesting that NICE include an “education” member on the committee. Teaching doctors to recognise the disease with clinical confidence would save so much money and time (she had seen 13 different doctors before she received an accurate diagnosis). Dr Charles Shepherd urged her to do this; he had already applied to join the committee as a medical professional. Nina added that she was thinking of applying to join as a lay member; the Chairman suggested she do so as a medical education person.​

 

Also from the minutes:

Nina also read out a letter she had received from Dr Jonathan Leech of the RCGP. In it he said he had read the transcript of the Westminster Hall debate and was very concerned about the treatment of ME/CFS patients reported by MPs. He had noted her concern about the College’s e-learning module – he agrees it’s awful – and he says they will review the module in the light of the new NICE Guideline. Finally she reported that BBC Radio Wales have accepted them for one of their autumn programmes. The 30 minute broadcast will include 4 to 5 guests including patients, medical research, and a charity.​

 

I wonder if she has any colleagues in Cardiff, or elsewhere, who would consider going to the training day in Bristol/Bath on 7 December which is concentrating on Safeguarding issues re ME in children?

 

Fabulous.

 

What new NICE guidance ?

 

Great talk. Good she’s quite well after two rough years, at least that’s the impression. But as ME-patients we now a thing or two about mobilizing strength and being positive, even when not being close to “normal” health and activity. Anyway it is uplifting (for future patients) knowing of relatively short timespans and what seems like progress. Once again it brings to mind how important it is with optimal actions early on. That requires at least basic knowledge, for example the importance that doctors know they that can’t push an ME-patient to progress and health. It can’t be more simple and basic than that, but the law and absolute truth of “just carry on” unfortunately result in the opposite. We may not ask for a lot more at this time in medical textbooks, but at least we demand such knowledge, that would fit perfect with “do not harm.”

Really like the bang-on approach of going at the medical schools and the idea of educating healthcare professionals. That is obviously so important, building knowledge from the inside of medicine itself, but must be a mountain to climb. Hope she is able to pursue this work with the necessary help and partners needed.

 

I would read that to mean the updated NICE guidelines due in 2020.