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Daily Telegraph: ME isn't 'all in the mind' but it's still a mystery

Firestormm

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26 November 2012: Daily Telegraph: Health: http://www.telegraph.co.uk/health/healthnews/9699911/ME-isnt-all-in-the-mind-but-its-still-a-mystery.html

ME isn’t 'all in the mind’, but it’s still a mystery

As medical adviser to the ME Association and an ME sufferer, Dr Charles Shepherd has spent the past two decades vigorously fighting the dismissive attitude still common among the medical profession. Here, he talks about the latest research into the disorder

dr_charles_shepher_2408582b.jpg


By Caroline Lavender

It was in the late Seventies that Charles Shepherd became ill with myalgic encephalomyelitis, or ME as it is better known. It was an era, he recalls, when the condition was still dismissed as “hysterical nonsense” by most clinicians.

Working as a young doctor at Cirencester Hospital, he had contracted a severe case of chickenpox from a patient with shingles. “I’d been perfectly fit and healthy. The infection had resolved but I felt mentally and physically knackered and kept having to take more and more time off,” he recalls.

Shepherd says he has never been truly well since. He “plods along”, though managing to enjoy life: he regularly walks Polar, his snow-white labrador, near the Cotswolds home he shares with his wife Pam, a nurse. On the day we meet, he is helping his daughter Suzie, a student in London, plan her 20th birthday (he also has two sons, Patrick, 28, and Alisdair, 31).

As medical adviser to the ME Association, Shepherd has spent the past two decades vigorously fighting the “all in the mind” attitude which, he says, is still common among the medical profession.

He is convinced that this complex disorder, which has puzzled scientists for decades, has biological rather than psychological origins – although unlike some on the militant fringes of the ME community, he prefers to use reasoned persuasion rather than threats when discussing the cause.

“I unequivocally condemn people who send abusive emails,” he says, referring to the harassment of researchers, doctors and journalists – including the Telegraph columnist Dr Max Pemberton – who have speculated on the “psychological” explanation.

“But I also understand why people feel so angry. A significant minority of doctors still don’t believe in the existence of ME. They refuse to diagnose or manage it – that is totally unacceptable.”

Now more commonly known as chronic fatigue syndrome (CFS), ME has come a long way since it was derided back in the Eighties as “yuppie flu” (its typical victim supposedly being a high-flying young professional).

Today, it is recognised by the World Health Organisation, the National Institute for Health and Clinical Excellence (Nice) and much of the medical establishment as an often severely disabling disease, characterised by a bewilderingly wide set of symptoms, the chief ones being profound fatigue and widespread muscle pain. Difficulties with concentration and memory are also common.

Yet the debate over the cause of ME continues. Is it biological, psychological or a combination of both?

The controversy flared up again in September, with the publication of findings finally disproving the theory that ME is linked to XMRV and mMVL, viruses that had previously been isolated in tissue samples taken from ME patients.

Scientists at Columbia University, New York, found compelling evidence that detection of the viruses was a result of contamination, corroborating two previous studies’ findings.

The collapse of this theory, greeted with dismay by some ME patients, came as no surprise to Shepherd, who says he was always sceptical of the “hype” surrounding it.

“In the US people spent a lot of money getting tested [for XMRV] and getting anti-retroviral drugs, but we have always advised against this because the research [from the University of Nevada, published in 2009, that implicated the virus ] hadn’t been properly evaluated or replicated.”

By taking this stance, Shepherd himself became the target of hate mail. “People get so desperate and put such faith in findings, they find it hard to have them criticised.”

ME researchers now view the illness as having three separate components: first, a (probable) genetic predisposition; second, a precipitating factor – which for 75 per cent of patients is an infection, usually viral, although occasionally other immune stressors such as immunisation may be a trigger; and finally the development of the condition itself. Other signs include fainting, low blood pressure, and irritable bowel syndrome.

The origin of such symptoms remains a mystery. One theory gaining favour is that ME patients have an aberrant immune response which fails to “switch off” after the original infection has resolved itself. In particular, it is possible that some ME patients have a surfeit of cytokines – chemicals produced by the immune system.

Another theory is that an auto-immune response (in which the immune system produces antibodies that attack the body’s own cells) may be involved.

Other research is looking at potential abnormalities in the muscles of ME patients, with evidence that some sufferers produce excess acid when they exercise (Shepherd himself took part in research on muscle tissue – and still has a scar on his leg to prove it).

One study at Liverpool University is examining potential structural abnormalities in the mitochondria – cell components which produce energy in a usable form – in skeletal muscle.

A further focus of research are abnormalities in the hypothalamus. This tiny pea-shaped gland in the brain regulates a number of functions including hormone secretion (via the pituitary and adrenal glands).

Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems.

“A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,” says Shepherd. In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands.

He concedes that ME researchers are still “fitting together the jigsaw puzzle”, with some way to go before treatments are developed. “We have reached a point where there are drugs that would be worth trialling,” he says. But clinical trials are expensive to run and the pharmaceutical industry, the only realistic source of such funding, has shown little interest.

In the meantime, can graded exercise (a programme aimed at building up activity levels) and cognitive behavioural therapy, advocated by Nice, help with the symptoms?

“The Nice guidelines on ME are not fit for purpose,” Shepherd argues. “They reflect the belief that this is a psycho-social illness.”

He himself is a fan of pacing – a technique which involves listening to your body to find the right balance between rest and activity. “I go swimming and walking, but within the limits of what I can do.”

He also feels progress has been stymied by rebranding ME as chronic fatigue syndrome. “Doctors never liked the term ME because it refers to inflammation of the brain and spinal cord, which has never been found,” he says.

“But calling it CFS has made research trickier because CFS is an umbrella term for different pathologies – it’s a bit like grouping together all the different kinds of arthritis and saying they have the same cause.”

He prefers the term myalgic encephalopathy, which reflects a significant neural abnormality in the brain.

He is encouraged, though, by progress at the Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008, and where, last year, £1.5 million was ring-fenced for this purpose.

So far funding has been approved for five studies – among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.

So is Shepherd discounting entirely any psychological component in ME?

“I have no problem,” he replies, “with the idea that the mind affects the body and the body affects the mind. Of course, people who are chronically ill get depressed and have psycho-social stress.

But the point is that too much energy and money has gone into research based on the belief that ME is psycho-social – when the right route is biomedical.”

Additional spacing added by me.

Well. What do you make of THAT then guys? Bloody good stuff to see. And in the Telegraph no less :)

I don't think you can leave comments unfortunately - not surprised though. Other articles in Health permit comments...

Anyway, the above is appearing in the hard-copy edition too I understand.
 

Shell

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I wish the Telegraph would unequivically condemn the attitude and recent article by Max Pemberton, but hey-ho.

This is a good sign from the press. At last.

On the ME name question - I was under the impression that some PMs that dx ME as cause of death did find inflamation of brain stem and spinal cord.??? Or they were riddled with infection at any rate, which would cause inflammation.

But then if MAST cells and mitrocondrial disorders cause ANS disorder and is at the bottom of ME perhaps many patiesnt don't have spinal fluid problems because the problem is elsewhere.
Perhaps if the money had been spent on genuine research we would have a descriptive name for our grottiness already.
 
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On the ME name question - I was under the impression that some PMs that dx ME as cause of death did find inflamation of brain stem and spinal cord.??? .

see: http://forums.phoenixrising.me/inde...-of-the-issue-dorsal-root-ganglionitis.20331/

The dorsal root ganglions are outside of the spine. And it's just a single autopsy, one can't extrapolate from that to a whole patient population, there's no autopsy of an M.E patient that has led to an assignment of cause of death. This whole issue is rapidly growing into a false and often repeated meme. There seems to have been just a single case where a UK coronor as has asigned a death to 'M.E' - it's not clear what that means (it could even imply psychiatric involvement) and is a legal judgement rather than a precise medical one. It would have no implications for any other case.

M.E was always a speculative name and the only sensible position now is to argue (as Shepherd has) that the CFS designation hasn't helped but medicine needs to move forward irrespective of labels, not because of them.

IVI
 

Enid

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It is good at last to see ME given "voice" by Caroline Lavender in the Telegraph. Knowledge, diplomacy and caution come across - Charles Shepherd being a sufferer and a Doc. Let's hope this is the end of all in your minders and negative press at the very least, and research/treatments pickup in the UK.
 

Firestormm

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It is good at last to see ME given "voice" by Caroline Lavender in the Telegraph. Knowledge, diplomacy and caution come across - Charles Shepherd being a sufferer and a Doc. Let's hope this is the end of all in your minders and negative press at the very least, and research/treatments pickup the UK.

That would be cool :)

Personally, I think that reasoned articles like this (and he did apparently spend some considerable time talking to the journalist about Rituximab and other things that never made the article) can only help to counter any other impression gained by other more inflammatory articles.

We need I think to reset the tone. Get back to considered reasoning and less speculation based on 'interesting' findings. What I like reading is 'Reviews' and I would get a lot I think from a similar review of ME research. Rather than specific publications of 'interest' more along the lines of what appeared in this article - but with more content.

Such a review could be written and published by e.g. the Lancet I would think. So long as it was reasoned and not pushing any one opinion. Something to help people know what the situation with research is now - as well as what is wrong with getting the basics in place and the lack of funding etc.

Note: Shepherd has made several addition comments on the ME Association Facebook page for those who are interested. I can't be arsed to paste them here at the moment. He also addresses the 'encephalomyelitis' and autopsy findings - again.
 

Sasha

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What I like reading is 'Reviews' and I would get a lot I think from a similar review of ME research. Rather than specific publications of 'interest' more along the lines of what appeared in this article - but with more content.

Such a review could be written and published by e.g. the Lancet I would think. So long as it was reasoned and not pushing any one opinion. Something to help people know what the situation with research is now - as well as what is wrong with getting the basics in place and the lack of funding etc.

I completely agree- that's exactly what we need.
 

Enid

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@ Firestormm - 5 - there is a problem (I see on Facebook too) that whilst welcoming this article and the points it covers so well, some disagreement over CS use of the term encephalopathies as opposed to encephalitis. Checking definitions I tend to agree, but then I was totally bedbound with polio like symptoms (amongst others eg sudden appearance of chicken pox), Taken together with abnormal brain MRI scan I'm more than certain of viral involvement and an encephalitis (my Neurologist too) But I guess that will resolve itself when all the facts are known.
 

snowathlete

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A fair article on the whole.
If all articles were written in a reasonable manner like this, that would be a great leap forward. I think Caroline Lavender did a good job overall. Hopefully she will get some positive feedback from the ME community and be interested in writing more about the illness.
 

Firestormm

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@ Firestormm - 5 - there is a problem (I see on Facebook too) that whilst welcoming this article and the points it covers so well, some disagreement over CS use of the term encephalopathies as opposed to encephalitis. Checking definitions I tend to agree, but then I was totally bedbound with polio like symptoms (amongst others eg sudden appearance of chicken pox), Taken together with abnormal brain MRI scan I'm more than certain of viral involvement and an encephalitis (my Neurologist too) But I guess that will resolve itself when all the facts are known.

I won't go into the definitions debate again, Enid. I was diagnosed with viral encephalitis along the road to ME. From what I recall (and I was thinking about this the other night), there was very little done in terms of examination or indeed specific treatment. At least not that I can recall and I was in hospital for some of this time also.

I am not proficient to answer this question, but I can't help but think that 'brain inflammation' is transitory. That encephalitis is treated - if at all - with anti-inflammatories. And that it either passes or you die. Funnily enough I have never ever looked into this. Can't believe I haven't. Thanks for raising it. Might do a thread - if one hasn't been done already somewhere :)
 

justy

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I think this is a great article for a newspaper in the UK to run. Well done to Caroline Lavender for taking the issue seriously. If we could continue to have it discussed in this manner in the media then it wouldnt be long before PWME were taken more seriously and given more support.

I wonder if this article is a taste of things to come as more and more research comes out, such as Fluge and Mella, that can;t be ignored. Some serious backpedalling will need to be done in the UK, and they may be beginning to set the scene? i do hope so.

Justy x
 

Sasha

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By the way, I think we should click on that link and visit the Telegraph site so that the editors can see the traffic it's generated - it will encourage them to do more good-quality stuff.

Good to see they've provided a weblink to the MEA.
 

Jarod

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I'd still like to know who constitutes the "militant fringe."

All the more reason for all of our posts, e-mails, comments, etc. to be as calm, polite, and rational as possible.

That statement about the "militant fringe" is one point in the article that seemed a bit ridiculous. "Militants" is one of many terms fabricated by journalists to denigrate people in the mid-east and to drum up public support for illegal wars/drone strikes.

Those nasty fabricated terms (used in media and not casual conversation) serves no other purpose than to denigrate in my opinion.

If a journallist wants to whine about complaints to their articles, they should create a seperate article for that and addres the issues.

The article as a whole was fantastic though. Dr Charles Sheppard covered that militant nonsense with this statement.

“I unequivocally condemn people who send abusive emails,” he says, referring to the harassment of researchers, doctors and journalists – including the Telegraph columnist Dr Max Pemberton – who have speculated on the “psychological” explanation. “But I also understand why people feel so angry. A significant minority of doctors still don’t believe in the existence of ME. They refuse to diagnose or manage it – that is totally unacceptable.”
 

Firestormm

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That statement about the "militant fringe" is one point in the article that seemed a bit ridiculous. "Militants" is one of many terms fabricated by journalists to denigrate people in the mid-east and to drum up public support for illegal wars/drone strikes.

Those nasty fabricated terms (used in media and not casual conversation) serves no other purpose than to denigrate in my opinion.

If a journallist wants to whine about complaints to their articles, they should create a seperate article for that and addres the issues.

The article as a whole was fantastic though. Dr Charles Sheppard covered that militant nonsense with this statement.

From Dr Shepherd on Facebook in reply to similar comments:

I know this isn't a popular thing to say but there are a VERY SMALL number of people who claim to have ME, or claim to have a relative with ME, that have behaved in a totally stupid manner in the way they criticise (and sometimes abuse) health journalists, politicians and the members of medical profession (including myself). This is not constructive criticism and it has led to a position where the APPG on ME almost collapsed after the last election (because some MPs would no longer have anything to do with it), some health journalists will no longer touch ME/CFS stories, and some health professionals believe that people with ME/CFS are paranoid and mentally ill. It is extremely counter-productive and I wish it would stop.
 

Firestormm

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Of passing interest...

Mum just returned from seeing her own GP. Who said 'Have you seen that great piece in the Telegraph today?'

I'm thinking I might switch to her doctor although I see my own on Wednesday - so shall see what he says (or not) :)
 

Enid

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I see VERY SMALL number quoted Firestormm and ME has had such a long history here in the UK - perhaps now Dr Shepherd has spoken out - ME isn't all in the mind - is crucial in the whole sorry saga.
 
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Dr Shepherd's choice of words is interesting. He mentions a 'stupid manner' in the way they criticise which is evocative in a way. He didn't explicitly say what people were saying is always wrong, but perhaps the subtleties of how one interacts with those who are important to the representation and mediation of mecfs issues needs to be heeded carefully. I've never been an A1 member of the Dr Shepherd fanclub, but my attitude has been changing somewhat lately to mecfs issues in general, and whatever you think about his opinions on mecfs, he has got about as close as anyone to breaking through certain walls that form the barrier which prevents our disease from being dealt with properly.

Abuse is a trickier word and begs definition. The line between challenging and abuse can only be drawn with the kind of compass that requires a microscope to read. There is also a problem with over highlighting it because when you step into the public eye, in every bucket of people, there's a drop of idiot, whether they have ME or not. I'd be surprised if every published journalist on the internet who has written something remotely evocative hasn't had some kind of bogus email.

I would like to see Dr Shepherd respond to this same question (as he has to, as it seems the gateway into any discussion about mecfs starts with doughing one's cap to mental health issues) by naming the many Scientists whose work challenges the psychosomatic theory on ME and who are actually quite agreeable and rational individuals. A stable of respectable identities whose work questions the psychosomatic basis for mecfs (Dr Shepherd at least carefully made the distinction between aetiology and co-morbidity) will help de-construct the misrepresentation that the SAS/SMC has stained many hard working, rational and upstanding individuals with.

But Rome wasn't built in a day so, congratulations and thanks to Dr Shephard for his efforts. Putting one's actual name and face to something is an act of bravery in itself ;)
 

Firestormm

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Studindawski I am always amazed by the amount of effort that goes into word analyse particularly with comments relating to matters such as those you touch on above. The analyse of 'abuse' 'militant' etc. etc. :) These are to my way of thinking expressions - generally - of disgust over behaviour. They are personal. Hell, I might call certain people 'idiots' too (not that I have - or maybe I have - can't remember off hand) but I wouldn't expect an analysis of my choice of word. I'd rather debate the context. And I think that this particular 'issue' has been done to death e.g. here: http://forums.phoenixrising.me/index.php?threads/negative-publicity-on-pwme-the-motive.19588/
 
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It's a difficult job to try to help CFS patients in the UK, but I think that Shepherd and MEA do a pretty good job. I recently signed up to MEA. I'm generally pretty clueless about different ME organisations, and the politics that occur there, but most of what I see from MEA is good and reasonable.