ME/CFS Alert Episode 125: Interview with Dr. Nina Muirhead

Description:

In this episode, Dr. Nina Muirhead, an Oxford-educated dermatologic surgeon and an ME patient, talks frankly with Llewellyn King about the diagnosis hole she fell into in Britain, how she coped with her deteriorated health, her wrenching private life (having to stay away from her two young children), and her demanding medical practice.

Her personal experience with ME led to her development of an online learning module for doctors, based on 10 ME patients' cases, “tackling some of the most common misperceptions of the disease.” ME patients, she says, "have a wealth of knowledge.

We are one of the best-educated patient groups there is." Dr. Muirhead says doctors and researchers on Long Covid “should stand on the shoulders of their peers, and learn from the ME/CFS research done today.”

She is a member of Forward-ME, the British ME/CFS advocacy group. Considering the cluster outbreaks of ME, Dr. Muirhead said there is concern about the disease "being passed on through patients giving blood -- passed on through plasma," and that there may be some environmental or genetic component.

There is where her ME story takes a terrible twist: one of her grandmothers, who was diagnosed as having Multiple Sclerosis and “hysteria” in the 1950s, died of ME at the age of 42, in a British mental asylum “with bedsores.”

Dr. Muirhead says without bitterness and with wisdom, “There were five months of hospital notes from the 1950s. My mother witnessed my getting the same illness. …. The same ignorance we saw in the 1950s is still being seen today.”

https://www.youtube.com/watch?v=dX4MwHDxoVA

 

At 2:50 she admits to not believing in ME before getting it. Sometimes I wish more doctors and officials would get ME so that we can speed up research and belief in the illness. Imagine if the GMC all got ME and started sacking GPs who treat ME as a mental illness. If the MRC got ME and decided to increase funding for ME research. If MPs got ME and voted to put 10's of millions in to ME research and to build specialist ME hospitals.

 

I believe the prejudice against ME is so deep that speaking up against colleagues after coming down with it yourself will take a lot of courage and receive a lot of backlash. So extra kudos to dr. Muirhead and other doctors with ME as dr. Shepherd for their advocacy work. To be honest, I do understand those who choose to not take the battle and believe that's probably a silent majority.

Even now with so many doctors and other health care personnel struggling with post viral illness after SARS-CoV-2 at the same time, they risk being rejected by peers. There's been some vicious attacks in Sweden for instance against Long Covid sufferers, and here's some recognisable frustration from a GP with Long Covid on Twitter (google translated).

- I think the lump in my stomach is because I simply had enough. Enough of being mocked and not listened to. Pasted a lot of epithet that is completely foreign to me. I fight every day. From healthy to getting 130 in heart rate after 40 m. And just being mocked. What is this?

- What happened to empathy? With curiosity and openness to the new, what we do not know enough about yet? That's enough now. I've had enough. There are many who rallied at the expense of those who have already been left alone for a year. How can you spit and kick those who are struggling to get up?

 

Why is Paul Garner given so much media coverage but there is nothing in the mainstream media on Nina Muirhead? I really don’t understand.

 

I suspect the answer has nothing to do with medicine and everything to do with politics.

 

Uh. Oh boy. This is like some medieval aristocrat going out in the real world and seeing how the peasants actually live and how it's completely unlike the few times they were escorted out to see a scripted version of it. It's only when you are on the wrong side of the desk that you can realize just how complete the power imbalance is, exactly how much unaccountable power is carelessly applied every day between physicians and patients.

Medicine explicitly removes empathy from doctors in training. It also explicitly advises to ignore the yacking noise patients make when we open our pie hole. We've been saying this for decades but it's just yacking noise to physicians. Ohhhh boy.

 

Yup. Manufacturing consent.

I think this is something Monbiot probably knows and understands well enough to apply here. Hopefully.

 

Sadly, it seems we all live in a barnyard, where some are quite happy to peck away at others. Controversy and pointing the finger sells papers. We can all psychologize. It's easy. We can all blame others for their problems: it's their own fault their health is poor. If they just cheered up and went for a jog they'd feel better. It takes a lot of hard work, skill, determination and much training to assess someone biomedically. Whereas the majority haven't done this, but can still play along at the BPS table. This seems to satisfy an itch many if not most have. Pick on someone else. Or a group of people. Reading about a group of people who "deserve" to be picked on makes some feel better about themselves; this sells.

Other than that as an explanation, the powers that be are still convincing the media that pwME are psychologically misguided to put it politely. And, are using the latest story on this to promote their campaign.

ETA: corrected spelling.

 

I remember reading a story of a GP who got ME and had to tell his colleagues that he had depression due to the stigma of ME being too high.

 

It's really bad when people tell others they're depressed instead of it really being ME. I wonder what happened if and when he didn't recover.

 

Thank you very much for Dr. Muirhead for her bravery, insight and hard work on this neglected topic. And thank you very much for Llewellyn King for his insight and dedication to this important issue.