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

Agree with most of comments above.
I'm not too keen on Charles Shepherd's adoption of the PPP approach, which seems to me to be a BPS model.
I don't believe anything predisposed me to be ill and I don't see that my illness is being perpetuated. No one would say that MS or encephalitis is being 'perpetuated'. There is just the illness.
 
JohnTheJack said:
Agree with most of comments above.
I'm not too keen on Charles Shepherd's adoption of the PPP approach, which seems to me to be a BPS model.
I don't believe anything predisposed me to be ill and I don't see that my illness is being perpetuated. No one would say that MS or encephalitis is being 'perpetuated'. There is just the illness.
Click to expand...

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?
 
Dr Carrot said:
Why do you not think anything predisposed you to be ill, out of interest?
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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.
 
I don't think it's necessarily daft to talk about predisposing, precipitating and perpetuating factors when trying to understand and research ME and explain it to 'outsiders'.

For example, it may be useful to know whether there is a genetic predisposition, and we need to challenge assumptions about predisposing factors like social class or childhood trauma.

And it's useful to understand what may precipitate ME, for example infection, and to challenge assumptions about whether behaviour at the time of infection such as too much or too little rest contribute to ME developing in some people and not others, and the idea that it's the same as burnout or depression.

As for perpetuating factors, again, we don't know whether failure to recover is caused by ongoing infection, a biochemical process that has failed to switch back to normal after infection, or some sort of neuroimmune damage or malfunction, or something else entirely. And we need to challenge the BPS stuff about false beliefs, deconditioning, overprotective parents etc.

I think it can be helpful to separate these three factors in discussing and explaining where we are in understanding the condition and countering the false narrative.

Edit - grammar
 
lansbergen said:
But not resting enough at the time of infection is a importent factor.
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I think it was for me, and it seems likely that it is for others, but I'm not sure whether there is strong evidence for this. Nor for too much rest. The point I was trying to make was that the BPS nuts think they can play fast and loose with the evidence, or lack of it, to suit their prejudices.

Edit: we need to challenge all claims, whether we agree with them or not, by applying the same high standards of evidence.
 
Trish said:
As for perpetuating factors, again, we don't know whether failure to recover is caused by ongoing infection, a biochemical process that has failed to switch back to normal after infection, or some sort of neuroimmune damage or malfunction, or something else entirely. And we need to challenge the BPS stuff about false beliefs, deconditioning, overprotective parents etc.
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I agree and I have a strong suspision what it is. Sadly there is no test to prove it.
 
JohnTheJack said:
Agree with most of comments above.
I'm not too keen on Charles Shepherd's adoption of the PPP approach, which seems to me to be a BPS model.
I don't believe anything predisposed me to be ill and I don't see that my illness is being perpetuated. No one would say that MS or encephalitis is being 'perpetuated'. There is just the illness.
Click to expand...

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?
 
Nasim Marie Jafry said:
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?
Click to expand...

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.
 
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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

 
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/
 
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Dr Carrot said:
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?
Click to expand...

My illness has never been a mystery to me. I know when where and from whom I contracted the virus. I know also that in the three weeks following infection, despite feeling unwell, I continued to party and to do vigorous physical exercise and that as a result the virus became ME.

I cannot discount the possibility of a predisposing factor, but it was far less relevant and so to me far less interesting than the continuing to be very active while infected. If I had spent a few days in bed and a few weeks or maybe at most a few months taking it easy, then I wouldn't have got ME.
 
Trish said:
I don't think it's necessarily daft to talk about predisposing, precipitating and perpetuating factors when trying to understand and research ME and explain it to 'outsiders'.

For example, it may be useful to know whether there is a genetic predisposition, and we need to challenge assumptions about predisposing factors like social class or childhood trauma.

And it's useful to understand what may precipitate ME, for example infection, and to challenge assumptions about whether behaviour at the time of infection such as too much or too little rest contribute to ME developing in some people and not others, and the idea that it's the same as burnout or depression.

As for perpetuating factors, again, we don't know whether failure to recover is caused by ongoing infection, a biochemical process that has failed to switch back to normal after infection, or some sort of neuroimmune damage or malfunction, or something else entirely. And we need to challenge the BPS stuff about false beliefs, deconditioning, overprotective parents etc.

I think it can be helpful to separate these three factors in discussing and explaining where we are in understanding the condition and countering the false narrative.

Edit - grammar
Click to expand...

Some of my point is merely semantic. I don't see failure to recover as perpetuation. I just see it as an ongoing failure to recover.

More generally, I just don't see my illness as PPP, which as I say, seems to be the BPS model.
 
Nasim Marie Jafry said:
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?
Click to expand...

I don't see my illness as having been triggered. I experience it as an infection/inflammation/post-inflammation encephalitic-type illness. I don't experience it as infection followed by triggered response.
 
Dr Carrot said:
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.
Click to expand...

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.
 
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