BBC Radio Scotland: Brainwaves, "ME - The Invisible Disease"

Homepage is link below. There is a BBC wide search function. I imagine there is a programmed timescale for updates

https://www.bbc.com/scotland

 

Meant to add that Brainwaves is quite a good series- a few subjects worth looking at on iPlayer

 

Why do you not think anything predisposed you to be ill, out of interest? We know virtually nothing about factors that cause people to get ME, so to say either way seems a bit like jumping the gun at this stage.

For example - I worked a very high pressured job before getting ill. Yet I was the only person in the company in which I worked to get ME, and from a virus that almost the entire population carries with them, and has no problem when it reactivates. So it would seem that there *could* be something else at play, in my situation, that would cause me to be more vulnerable to ME.

And *if* (another if) we are able to identify predisposing factors, then this will surely go some way to prevention and harm reduction when it comes to future patient cohorts.

Obviously qualifying all these statements by reiterating that we know virtually nothing here. But it seems like Charles' approach is a good one?

 

There's no strong evidence of specific predispositions yet. Additionally, predispositions can be a dangerous territory with any disease, as there's a habit to blame lifestyle factors (and the victim) unless there's a 100% genetic cause or similar.

Regardless, any talk about perpetuating factors is blatantly ridiculous. The disease perpetuates because it hasn't been cured yet, just like every other chronic disease.

 

But not resting enough at the time of infection is a importent factor.

 

I agree and I have a strong suspision what it is. Sadly there is no test to prove it.

 

I think what Charles means by perpetuating - is why do we not recover from triggering virus - the trigger of classic ME. I think the word perpetuating has been poisoned by BPS crowd. Why, for example, did others recover from Coxsackie infection, but I didn't? Why do many young people recover from glandular fever, but some don't and go on to develop ME. We are having an abnormal immune response - but why?

 

This is what I was trying to get at.

The politics of it is also why I often avoid giving a fully detailed social history when asked by a new doctor, because I had an intense period of stress for several years in the work and social aspects of my life before the virus came along.

I feel like it's easy for someone in the medical profession who is closeminded to simply put it down to stress alone, yet plenty of people probably go through the same or worse, and don't develop ME.

 

If anyone wants to see ME mystery controversy debate and misery from a different era here's a 1990/1991 Robert Kilroy silk discussion program with an audience and Drs shepherd, Ann mckintyre , Peter white and a neurologist. Some comments achingly familiar, even one lady pointing out CFS in uk is a broad term catch all for cf, whilst ME is specific. RKS is an idiot on here but it just shows uk stalemate

https://www.youtube.com/watch?v=8VOVirWlhT0

 

Some info on OHC:
"Conscious Psychology
Healing the past, creating the future, living in the now
Professional training in Hypnotherapy, NLP,
Life Coaching and EFT

Delivered by
Alex Howard
in association with
The Optimum
Health Clinic"

http://www.theoptimumhealthclinic.c...Conscious-Psychology-Training-Course-2015.pdf

eta: they have also recently produced a 'documentary'
http://www.secretstorecovery.com/trailer/

eta2:
see also:
"We are currently fundraising for a unique, three-year, randomised clinical trial with the aim that our treatments will soon be available to all, via the NHS. The trial was officially announced at a reception at the House of Lords for the research collaboration with University of Surrey."

"We believe that our integrative medicine treatments should therefore be offered as a treatment choice by the NHS to all 250,000 ME/CFS/Fibromyalgia sufferers"

"We will then seek to persuade the NHS to offer integrative medicine as a treatment choice to all sufferers of ME/CFS/Fibromyalgia."
http://www.theoptimumhealthclinic.com/case-for-support/

 

They might be iffy but I don't think the existence or not of the optimum health clinic has really had much impact on the ME field.

 

I would agree - but I also think things like this are worth keeping an eye on, particularly with NICE guidelines up for debate.

 

It's also easy for medical professionals to judge others' stress levels by their own standards. Many people actually thrive on fairly high levels of stress in a work environment.

I have had a neurologist claim that my job sounded very stressful - and it probably did to him. But over the period of my career I progressed into that job and had all of the relevant training and expertise. That's the problem - where he saw stress, I saw challenge and thoroughly enjoyed it.