UK CMRC 2018 Conference Dr Nina Muirhead

This thread has been split from the CMRC conference thread here

See also the MEA Summary page 5.


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Nina Muirhead's presentation is very good and I think she will be an asset to the cause. I don’t understand why the type of enquires with medical schoo, education hasn’t been done properly before but what she’s suggesting doing in survey form sounds very good

It’s useful because she is a compelling speaker and crucially is a self aware doctor and went from 100% to quite low quickly. There’s no room for psychobabble here. All the above might also be why she herself has picked up quite well. PS factors can compound any illness but it’s been an injustice to universally Frame an often clear cut, post infectious illness as bio psycho social and teach generations of health professionals that we can just be treated with the PS & rehab and don’t need biological research or have a biological condition

When I think of the CBT CFS model - possible child abuse or trauma history, starts with infection but person becomes obsessed with signs and symptoms and unhelpfully afraid and avoidant of exercise and increasingly depressed - it’s so inaccurate, as this highly typical presentation she describes shows .

 

Just watched this and thought she was excellent.
She said she paid to have her ATP levels checked(?) could this not be a standard test as part of an ME diagnosis?

 

I think it was. Mea were suppposedly researching that test , I haven’t seen it published. I did it years ago but GPs uninterested. Some controversy around it as one severe lady posted her healthy husband did it too and got sick results

 

Looked like Amalok Bansal' s protocol that she followed that improved things. Sadly retiring 2018 ( if not retired now)

 

I don’t really know if his protocol had anything spectacular. The lady went down severe quickly, had an excellent support from work and family was able to get a private nanny in to look after her children , presumably was too ill to attempt any “struggling on “ or GET, was probably knowledgeable /wise enough to TLC herself and like many others has improved.
I think he’s retired yes.

 

I picked up his name from one of the slides.
There are very few NHS consultants for ME who would prescribe antivirals and B12 injections .

 

But the anti viral he uses doesn’t have good evidence, in the states they use different ones. B12 is still anecdotal as the studies haven’t come through, what happened to the OMF folate one ? I agree most drs will do nothing but I don’t assume those things are why the dr significantly improved from her initial level. She was lucky to see him though , who are the good UK nhs drs now ? Newton , a rheumatologist somewhere. I wonder who replaced dr bansal in the end.

 

I think Newton is in Newcastle. Used to be referral for some Scots - harder to achieve these days and a long journey.

I don' t know if Bansal has retired from private practice - i know of some who have done this route both in person and via Skype

He is seemingly a very understanding and empathetic doctor.
B12 has had an effect for some, ( depends which version if B12) antivirals very mixed. I think the antivirals require to be deployed for longer ( USA seems to be 2-3 years?)

He was doing some interesting research on glucocorticoid receptor resistance which i dodon' t think has been published. I think @alex3619 was interested in this.
Perhaps it was a null result - but it would be good to see nonetheless.

 

Nina Muirhead visited one of the mum's on a parent's forum and came across as caring, supportive and determined to address the inequalities in care and lack of medical knowledge.
We need more such medics.

 

Absolutely. I spent time at the conference with her parents who were FANTASTIC, and even though Nina herself had to be wheeled out on a couple of occasions, when she "recovered" she was back in the fray and incredibly inclusive & keen to talk to everyone (even beckoning me over at one point to join her & the other PAG representative there).

She's excellent, and I do hope she will continue to make a positive change from the medic's point of view, around awareness as well as improving education (which was her main aim here in Bristol).

 

Dr Bansal retired from NHS practice at the end of Aug, and is currently away from work sick. He is intending to return and continue seeing private patients, and do research. He is very understanding and empathetic.

I had NHS B12 injections prescribed by him in about 2010 but felt no benefit. Maybe I didn’t have enough. It was about once weekly for 6 weeks whereas I think doses are more frequent/ longer in US.

I am taking acyclovir which he prescribed privately about 18 months ago. I had a very bad herx like reaction for 4/6 weeks ( it was really hard to keep going) but no clearly positive result so far. Fingers crossed for the future. It may be Valcyte that is helping in US but I haven’t talked about that with him.

ETA: he is intending to do research but if you think this post is better elsewhere MOD, please move it. A few people on various threads have asked what he is doing, so I added my bit.

 

@Cinders66

His job was advertised as a 12 month short term appointment. It sounded very BPS focused. I don’t know who was appointed.

 

Wow, what an asset! Worth inviting her to the forum, @Trish? (Not sure who to tag!)

 

I spotted that she shared her talk on Facebook and left a comment, linking to here, saying that her talk had been well received.

 

BTW, the study that she mentioned as indicating a need to get better life-expectancy figures for ME/CFS because it indicates that we die, on average, 17.5 years earlier, is not a very good study (I feel calmer now!):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/

Respondents (friends, family, caregivers of a deceased PWME) were self-selected in response to requests to take part via social media, which is a recipe for bias, IMO.

 

I wonder if there's any help we can offer her?