Saturday, 22 April 2017

Dr Myhill is campaigning for CFS/ME patients

Dr Myhill is a well known name amongst the CFS/ME community thanks to her book "It's mitochondria not hypochondria" which talks about some of the physical causes of the condition. She presents the science behind the theory that those with CFS don't have properly functioning mitochondria, which leads to us being unable to produce energy properly. 

Personally, I never had mine measured as it was too expensive and Dr Myhill can only take on a certain number of patients at any one time. But, I did follow a lot of the advice she recommends - changes to diet and taking a number of different supplements which my body needs in order to produce energy. This made a big difference to my health, it was a turning point in my recovery combined with the hydrotherapy I was offered. I'm very much of the opinion that what works for one person may not work for everyone, but this was something I could try without fearing I'd do further damage. I don't follow it strictly anymore although if I'm crashing I do to help me recover faster.

Dr Myhill has launched a campaign called MAIMEs- Medical Abuse in patients with ME. Details of which can be found here:

It's all about getting support for a public inquiry into the treatment of CFS/ME, the PACE trial and ultimately giving patients access to better treatment.

The Guildhall in Worcester where I met Robin Walker

I went to see my local MP (a Conservative Party member) to talk to him about it. He was surprisingly clued up on CFS having met people from the local support group already, and he was very interested in my own experience following Dr Myhill's programme rather than the NICE approved cognitive behavioural therapy and graded exercise therapy. He wasn't very keen on the language and tone of the campaign itself (which in all honesty I understand- it feels very aggressive which is likely to put some people off) and didn't want to involve himself in it at this stage, but was supportive of the principles around improving patient care. 

He's going to write to Jeremy Hunt's office asking about the current approach, the PACE trial issues and for other approaches to treatment to be reviewed. I suspect it might be a while before we get any response under the current circumstances!

The MAIMES campaign asks us to keep contacting our MPs until they officially sign up to the campaign asks, but I don't think that will be hugely effective with mine over the next few weeks. I'll wait and see who gets the job in June (I suspect it'll be the same one mind you!). Either way, I definitely believe this is a campaign to get behind.


  1. This is so interesting! I suffer from CFS but mine is down to chemicals in my brain, as different medications - I am trying one for epilepsy - seem to effect my fatigue differently. For me it seems to be my brain being overwhelmed, going outside makes my eyes feel awful and everything jumps about uncomfortably and makes me feel so ill and sleepy, and from that comes the fatigue and I am paralysed >< it makes me feel so frustrated that people don't realise how physical it is, exactly like having flu. It's so lovely to read you have similar to me, it means so much as feeling like this is so isolating >< loving your blog, following you on GFC! :D xx

    elizabeth ♡ ”Ice Cream” whispers Clara
    (lets follow each other on bloglovin or instagram)

    1. Thanks Elizabeth :) Its definitely a life changing condition, we all seem to have such a big range of symptoms and causes too. I agree, it can be pretty isolating, but I think the online community is fab :)

    2. PS. Just looked you up on insta :)