After spending about a year working on the subject, BBC Alba – the sub-titled Gaelic channel in Scotland – will present the results of their research into M.E. on Monday, January 23 and on January 30.
The station will present a two-part programme, each lasting about an hour, called ‘ME: An Sgìths Nimheil /ME: The Toxic Tiredness'. It will appear in their ‘Trusadh' / ‘Gathering for Success' series, starting at 9pm each night. The programmes can be watched on Freeview (Scotland), Freesat and BBC iPlayer.
The ME Association has been heavily involved in helping BBC Alba prepare the programmes.
PROGRAMME BLURB
What would you do if you had an illness which no-one could name? What if it made you so tired you couldn't put one foot in front of the other, or even drink a glass of water? And what would you do if your doctor didn't believe it existed? Welcome to the world of ME.
Over 250,000 people in the UK are estimated to suffer from ME. Scientific opinion is sharply divided over the cause of the disease, the symptoms by which it should be diagnosed, the treatment methods which should be used and even – most disturbingly for sufferers – whether it is a ‘real' physical affliction or a psychological ‘false illness belief'. One thing is certain: it wrecks lives and in the absence of definitive research sufferers must live their lives in a frustrating limbo.
In the first of a two-part Trusadh special on the illness, we hear the stories of five ME sufferers, their descent into illness and their quest for treatment.
Dè a dhèanadh tu ma bha tinneas ort nach ainmeachadh duine? Dè ma bha thu cho sgìth ‘s nach cuireadh tu cas air beulaibh cois, no nach b' urrainn dhut fiù ‘s glainne uisge òl? Agus dè a dhèanadh tu mur an robh an dotair agad a' creidsinn gun robh an leithid ann? Fàilte gu saoghal ME.
Thathar a' dèanamh tuairmse gu bheil còrr is 250,000 neach anns an Rìoghachd Aonaichte a' fulang leis an tinneas air a bheil ME. Ann an saoghal an saidheans tha diofar bheachdan mu na tha ga adhbhrachadh, na comharran, an leigheas ceart, agus – ‘s dòcha an rud as draghaile buileach dhaibhsan a tha a' fulang leis – fiù ‘s ceist ann a bheil e na ‘fhìor' chor chorporra, no ‘tinneas fuadain' a tha san inntinn. Tha aon rud cinnteach ge-tà, tha beatha dhaoine ga sgrios leis, agus às aonais rannsachadh deimhinnte tha an luchd-fulaing air fhàgail ann an saoghal iomagaineach, mì-chinnteach.
This is probably the biggest amount of airtime given by the BBC to ME/CFS since the Radio 4 ‘You and Yours’ programme ran five programmes on the subject across one week in 2007.
Air time is one thing, but why on earth is “Mickel Therapy” in it?
It’s just another money making con, preying on desperate and very sick people.
They are not based on anything scientific, but on (completely untrue) “assumptions” (their word) about how the flight-fight systems operate.
I “discovered” them on the internet long before I knew anything about ME or CFS or any of the so-called controversy touted. I read the webste and I could tell immediately they did not have a clue about how the body and brain act under stress – a major area of interest I had at uni.
Just read the website – complete pseudoscience.
I can tell you where e-motions belong. Down the e-pan.
Why is the BBC advertising such blatant charlatancy?
Can anybody explain why, here in Scotland, where the New Guidelines are being implemented, and the current paper on the subject is pushing to tighten these guidelines further to use the Canadian Criteria exclusively to diagnose ME and the NICE guidelines exclusively to give a description of CFS (which is not a diagnosis – it’s a syndrome – a collection of symptoms which can have many causes) precious air time is being given to futher conflate the whole mess by lumping ME and CFS together?
This is a step backwards, this is not in the interest of any sufferers of ME, this is not in the interest of the whole wonderful and pioneering aim of Scotland to properly differentiate ME and CFS and move medicine and science forwards.
Why is the “ME” Association working against ME sufferers in this way?
You had the opportunity to air a programme which could promote Scottish enlightnment on the subject.
Instead, you are dragging us back down into the Wessleyan School’s invented “controversy”.
There is no controvery. There never has been.
I’m utterly ashamed of you.
And you are shaming Scotland.
Peggy-Sue – Why don’t you wait until you have seen the documentary before you dismiss it out of hand? I too deplore the conflation of ME with ‘CFS’, I have seen my now almost 30-yr-long illness being hijacked for decades by the powerful, psychiatric lobby (SW and the rest, including blinkered health editors). I too am heartened by Scotland’s ’embracing’ CCC, and the recent SPHN report highlighting the absolute necessity of separating neuroimmune illness from these nebulous, much less disabling ‘fatigue syndromes’.
When I first volunteered to take part in the documentary last spring, I made it clear I have nothing to say about Mickel; as far as I am concerned it is wholly irrelevant to me and I did not even want to spend time and energy discussing it – I am exhausted – – and truly bored – with the suggestion of these mind-over-matter therapies for ME, though Mickel is not really heard of so much these days, it seemed more prominent five or six years ago.
Then after the kicking PWME took in the summer in the media, I actually said I did not want to take part in Alba doc, I just felt so weary and demoralised, I didn’t want to talk about ME at all, I’d spent so much energy – and tears – in August, replying – pointlessly! – to these dreadful articles fuelled by SW.
However, I met with the director, who was extremely sensitive to my p.o.v and still very keen for me to contribute. He said he wanted to ‘bring light to the subject not heat’. I agreed to take part if I could read some extracts from my novel, as I really have said everything I want to say about the illness in my book, there is nothing more I can add. The process of filming was interesting, both Robbie (the director) and the cameraman were charming. I felt afterwards I had done something positive for PWME. And I am sure they have both learned something from their encounters with the others.
I do not know the other participants, and I do not know what treatments they have tried (the documentary follows people’s quests for treatment, as far as I know). I do however know that Professor Behan, the consultant neurologist who diagnosed me in early-mid eighties, appears in part two.
It seems bizarre that you slam the MEA (who only advised, they did not devise the prog) and the programme-makers when you have not even seen the programme. I have not seen it yet either – and you never know how you have been edited – but I have faith that the creators of this documentary are not ‘promoting charlatan cures’. That was not their aim. I would hardly have taken part if it was. Who knows, maybe the documentary will actually inform some viewers and they will come away with a new understanding of what ME is?
Ok, I’ll try to calm down a bit. :-).
I encountered this link yesterday on an ME forum.
http://www.mickeltherapy.com/news/bbc-documentary-aims-to-raise-awareness-about-m-e/
And could not, for the life of me, think why on earth this should be included.
Why not highlight all the real research findings, rather than Freudian psychiatric opinions?
The wonderful work here in Scotland by the Cardiovascular Epidemiology Dept. at Ninewells, the work of Prof Julia Newton in England, the work by the Pacific Group in the states who have tracked, defined and demonstrated without any shadow of doubt, the physiological weirdnesses of post exertional malaise, these are just simple things off the top of my head – there’s a great deal more.
ME is WHO defined as a neurolgical disease.
I followed the You and Yours programmes with great excitement, but the BBC disabled comments before the last programme – the only relevant programme to ME – the rest was wesseleyan twaddle.
Simon Wesseley is not a scientist. He’s a medic with a bit of psychology tacked on the end. He has no understanding of how to practise scientific research, he fiddles his results, he ignores evidence and he messes around in order to get his “citings” records escalated – another nastly little feed forward mechanism!
And he refuses to study homogenous groups of patients.
You don’t gain an understanding of bananas by looking at a fruit salad!
Are Professor Malcolm Hooper’s opinions being included? He’s a real scientist.
This summer, quite apart from all the stuff going on in the states, the new International Concensus Criteria were published.
What was reported by the BBC?
A rehashing of the 2009 New Scientist article about “ME terrorists” unsubstantiated death threats, and “poor ickle me” from Wesseley.
Forgive me if I don’t trust the BBC – or any media attempt to deal with this honestly.
I really, really hope I’m going to be proved wrong.
But I’ve had my hopes dashed too many times before.
The real science has proven, beyond any shadow of doubt, that ME is a physiological disease.
There IS no controversy. It is NOT a matter of opinion.
It would be so simple to make a programme explaining the physiological realities of what goes wrong in our bodies and why and how they don’t function properly. It really, really would!
Shove a few of us (who are not bed-bound) on exercise bikes and do exercise tolerance tests over a couple of weeks to follow the strange ways our hearts don’t function properly, the progress of the damage and onset of of malaise.
This is SO easy to do. It’s a basic second year Physiology practical class.
The MEA is the only place I have found where I can post my “opinion” on the matter. I believe there’s something on facebook, but I’m not on it, I can’t cope with it.
Thank you for taking the time and considerable effort to reply to me, I appreciate it.
And for your prompting to be scientific about it.
See what the results are BEFORE coming to any conclusions.
I wouldn’t like anybody to think I’m as unscientific as wessely. That would be a shame I could not live with.
🙂
Peggy-Sue
You are jumping to conclusions without even seeing the programme.
The MEA is not ‘working against’ people with ME/CFS.
I regard Mickel Therapy as yet another highly speculative talking therapy and expressed my scepticism about the scientific basis behind it in another programme on BBC Scotland some time ago. The interview (which I recorded in London) may still be available on You Tube somewhere.
The MEA has been regularly advising the BBC on this programme over the past year and I have been up to Glasgow to make a contribution on biomedical research etc.
But we did not have any editorial control over the range of issues covered and who was interviewed. I offered suggestions on who/what to include – including neurologist Professor Peter Behan, Dr Gregor Purdie and the 25% Group re severe ME.
Some suggestions were followed up. Others were not. The BBC does not hand over editorial control to advisers or contributors.
I would have preferred the programme to have kept away from talking therapies that have not been subjected to well conducted clinical trials (and said so) but the BBC wanted to cover a range of opinions on management.
It does not make sense for ME charities to refuse to take part in media coverage of the illness simply because they disagree with the views of another contributor. If we followed this line we would never be able to put our case across.
The programme should be available on IPlayer for those outside Scotland and it should be worth watching.
There is also a discussion taking place on this programme on MEA Facebook.
From the Stornaway Gazette, 20 January 2012
Toxic Tiredness examined on TV
WHAT it is like to have an illness which makes sufferers feel so tired they can’t put one foot in front of the other, or even drink a glass of water, and which many doctors don’t believe even exists, is examined in a new two part BBC ALBA documentary: An Sgiths Nimheil (The Toxic Tiredness).
ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome, now affects around 250,000 people in the UK – including a number of islanders – but medical opinion remains split over its cause.
It is characterised by severe fatigue that can leave sufferers unable to continue with normal life.
Some claim its roots are purely physical, occurring post-virally, others believe that psychological triggers are involved.
The truth is unclear and there are wide divisions between the different schools of though, all explored through the new Trusadh documentary.
The first show focuses on five people who have ME, finding out the impact the illness has on their lives and their quest for respite – Allison MacColl, a nurse and mother from Lewis; Sean Ankers, a divinity student from Inverness; Neil MacLean, a policeman originally from Lewis but now living in Easter Ross; Kim Ayres, a photographer and entrepreneur from Dumfries; and author Nasim Marie Jafry.
The second programme takes a closer look at the scientific debate behind the frustrating uncertain world of ME and its treatments, exploring the work of David Michel, a Scottish doctor who believes he has found the `cure’ for MR though a talking therapy which addresses an imbalance in the emotional centre of the brain.
Although he has no scientific proof, he claims a positive success rate.
The Trusadh team follow Allison and Kim as they undergo Mickel’s controversial therapy, as well as hearing a very different perspective on the illness from neurologist Prof. Peter Behan, who has carried out ground-breaking studies on ME at the Southern General Hospital in Glasgow.
Trusadh – ME: An Sgiths Nimheil / The Toxic Tiredness begins on Monday, January 23 and concludes the following week, Monday, January 30, on BBC ALBA.
Hey Peggy Sue,
Thanks for your reply, I *do* understand why you got upset when you saw that link, I felt a little alarmed too, but the Mickel Therapy thread is only one thread in the documentary.
To the best of my knowledge, the makers of the programme are presenting an unbiased and balanced account of the impact of ME on our lives, and treatments we may seek (or not seek). And if some sufferers say they have been helped by MT, they clearly want to tell *their* story, though it is not my story or your story. But it’s not as if MT is enshrined by NICE like GET & CBT. No one is going to force you to have it, it is a choice. We now have the Scottish Public Health Network report on our side. Psychobabble is out.
I am just glad this kind of programme is being made, it gives us all a platform, a rare thing for pwME in media. And the fact Prof Behan was taking part definitely swayed me. I also sent the researcher/director articles by Prof Hooper, and the new ICC.
Dr. Shepherd,
CFS/ME or ME/CFS are “wesseleyan school” inventions/conflations unsupported by any science, and unlike these self-proclaimed experts (including Dr. Mickel and the lightning process) I’m not in the business of ignoring science which has been properly carried out.
I understand both scientific methodology and the appropriate use of statistics. I primary source the papers I read.
I have Canadian Criteria ME.
I do not have “fatigue”. I am not “tired” either.
My body suddenly, in the space of less than a minute, during a lovely long walk of a few miles, stopped working.
I went from striding along in my usual very fast mode (I was very fit from regular yoga and hillwalking) to struggling to hold myself upright and having to push each leg forwards – it felt as if gravity had suddenly been mulitplied 4 times, as if I was suddenly living in an invisible ocean of treacle.
I carried on for the next few miles, expecting it to vanish as suddenly as it appeared. When I got home, I crawled to bed and slept for 48 hours, but that was the only time I ever did oversleep.
My problem with this disease is *not* sleeping.
I have problems with short-term memory and sensory overload. I don’t “do” facebook.
The time for playing sycophant to the self-proclaimed “experts” is over.
How can any scientist take mickel therapy seriously?
If you can’t see for yourself the disclaimers in the website, the hi-jacking of a few scientific-sounding words to make it seem plausible – with the icing of making it sound a bit computery to appeal to today’s zietgeist – and then telling a little fantasy story using these words while ingoring what is known about how the body and it’s brain do work… I despair of your knowledge.
The time for using the correct diagnostic critera to distinguish ME and CFS from each other and for reseach on each to be carried out seperately, is LONG overdue.
However, as I have already said, it is wrong of me to dismiss the programmes before seeing them and draw conclusions before I have seen the evidence.
That’s what the wesseleyan school do.
Cross-posting nmj,:-)
I’m in payback right now, after all the extra hassle of having to travel a very long distance to see severely disabled elderly family, who may not see next year.
I’m very stressed by life doing its usual trick of getting in the way of surviving, my brain does not process information very quickly, short-term memory problems get in the way of being able to think about more than one item at a time.
You at least, understand the shock to the system of seeing such non-science being touted, yet again.
But it seems that Dr. Shepherd didn’t bother to read my first response to you, where I capitulated that I am wrong to jump to conclusions before seeing the programmes.
This is, I believe, my third capitulation.
I’m a scientist. I change my theories when the evidence disproves them.
It’s unfortunate that the BBC, along with New Scientist and the Science Media Centre, the MRC, the DWP and the Health Service have demonstrated so much determination in colluding to keep the “opinionated” afloat in the past.
For those who have not heard of Professor Peter Behan:
Peter is one of a small group of UK neurologists who believe in the neurological classification of this illness.
Peter has now retired from his consultant and research post at the Institute of Neurological Sciences (Southern General Hospital), University of Glasgow but is still involved in ME/CFS research.
Along with colleagues, including John Gow and Abhijit Chaudhuri, he was responsible for much of the early research that helped to establish a biomedical/neurological model of causation. He also worked very closely with Dr Melvin Ramsay.
Professor Mina Behan, who sadly died a few years ago, was also heavily involved in ME research – muscle and mitochondrial abnormalities in particular.
When I was up in Glasgow with the BBC during the summer I asked Peter if he would appear on the programme. He readily agreed.
I would hope Professor Behan understood the neccessity of neurological classification, rather thean simply stating some sort of woooly “belief”
Science is not about “beliefs”.
It’s about hard, porperly demonstrated evidence.
I have not read this established biomedical/neurological model of causation.
Have you a reference to the origianl paper, in full?
Prof Basant Puri also came up with a theory of causation, but it’s not right, is it?
hmmmm
“Models”, to my understanding, have a nasty tendency to be “top-down”, rtharther than the proper scinetific way of doing things – from the bottom-up.
Sort of like trying to decide how a loaf of bread comes into being by looking at breadcrumbs and imagining their relationship with the crust, rather than studying the interactions of flour, gluten yeast, water and temperature.
Sort of like the so-called “bio-psycho-social model” of illness perpetuation.
Pick an untestable notion out of thin air and run with it.
Peggy Sue
I can assure you that Professor Peter Behan is NOT a ‘woolly beliefs’ sort of neurologist.
You have clearly never met him!
And it sounds as though you are not familiar with the research that his group did at the Institute of Neurological Sciences in the 1980s and 1990s.
I did not suggest he was a woolly belief sort of Neurologist at all.
I was commenting on *your* statement the HE BELIEVES rather than he IS SURE or that HE KNOWS.
No. I’ve never met him.
And no, I’m not familiar with his research.
And I cannot find a reference for a biomedical/neurological model in order to read it. I have searched.
Is he a trained research scientist or a medic?
You do not seem to be reading what I am writing.
To be honest, I don’t know if I think it’s a neurological disease. Not at the root of it.
I’m inclined to think it’s disorder in the mitochondria, (possibly retroviral) and affecting the turnover of ADP to ATP.
I do not use the word “belief”.
I say “think”. It says what I mean. It says I take personal responsibility for my statement. It infers that I can think something else if I find evidence to the contrary, not that I will cling to it despite evidence to the contrary, which is what the word belief implies.
Belief is just a bad word to use.
That’s the only thing which would give rise to all the system malfunctions in the body, so the neurology would obviously be included.
Peggy Sue
In our current state of knowledge nobody can say for certain what causes ME/CFS.
So sensible doctors and researchers assess the all current published research findings with an open mind, take note of what their patients and colleagues have to say, and make a judgement based on this information.
My longstanding view is that we are dealing with a complex multisystem three stage disorder that involves predisposing factors (eg genetic predisposition), precipitating factors (viral infections in particular plus other types of immune system stressors, such as vaccinations, in some cases, sometimes combined with physical or mental stress) and perpetuating factors which involve abnormalities in the brain (hypothalamic and autonomic dysfunction in particular, muscle (mitochondria), neuroendocrine system (HP axis in particular) and neuroimmune system (pro-inflammatory cytokines in particular). Some of the symptoms of the illness itself (eg sleep disturbance and pain) also play a role in maintaining ill health and disability.
I just do not believe physicians, psychiatrists and researchers who claim that they know the answers ‘for sure’.
There is still too much uncertainty to solve.
I think it will still take time to find the cause, but the realities of the seriously abnormal physiology are beyond doubt.
These can be easily and simply ascertained.
My body “operates” in an anaerobic metabolic state. The slightest incline in a pavement causes severe lactic acid pain in my legs. Instead of my blood pressure rising to compensate for the oxygen debt of this marginally extra effort, my heart races and I get breathless.
If I overdo some activity, I get delayed “post-exertional malaise”. As my disease has progressed, the delay has become longer and the payback lasts longer too.
All of this could *easily* be measured.
Science never knows anything for sure. It is never more than “to the best of the current state of knowledge” and it has to be open to new evidence which carries knowledge further.
Science will not progress in this field until the proper diagnostic criteria are used to differentiate between those with ME and those who have some other undiagnosed illness which is giving rise to CFS symptoms.
A friend of mine suffered from “CFS” (and being forced into GET and CBT and antidepressants) for 10 years before serendipitously, it was discovered that he’d “simply” needed a pacemaker all along.
He had heart failure.
The only place psychiatry has in ME is to support the sufferers with the devastating consequences of having such a disease – in the same way as psychiatry may have a use in any other disease with similar consequences.
Wesseley’s distortion and manipulation of both collection and dissemination of data preclude all his “work” from being given any credence. Sadly it would appear that the peers who review him are as ignorant as he is.
Medicine does not teach students how to practise or research science.
I have worked beside two Clinical Professors who are truly great scientists, I do not dismiss all medics I can assure you.
I dismiss bad science.
So should you, and all others in this field.
I can only assume that, as the appallingly bad science of psychiatric angle is included, it is because of the medical profession sticking together and looking out for each other’s welfare before that of their patients.
There is no evidence that “functional somatisation disorders” exists.
It’s a Freudian concept, untestable.
Wesseley’s diagnosis of “mass hysteria” at the Camelford water poisonings has been debunked.
Gulf War Syndrome is not another “functional somatisation disorder”, he was wrong about that.
And he’s completely and utterly wrong about ME.
Mickel Therapy(tm) is way beyond “skepticism”.
It’s far closer to being a cult.
And any treatment outcomes of any therapy will depend SOLEY on what ailment the sufferer has in the first place.
Given every cell in the body depends absolutely on the mitochondria functioning properly, dysfunction at this level would give rise to multisystem failures.
It would therefore seem prudent to investigate at this level as an absolute priority.
Peggy-Sue
I am in complete agreement with you about the need for research which investigates the role of mitochondrial dysfunction and muscle energy metabolism in ME/CFS.
I don’t know if you are aware of the fact that I worked with Professor George Radda at Oxford back in the early 1980s in which we used my own muscle to demonstrate an abnormality in muscle energy metabolism – excessive intracellular acidosis during exercise. The results were published in The Lancet back in 1984 and this research then led onto the study by Prof Mina Behan (which also used a strip of my own muscle) to demonstrate structural abnormalities in muscle mitochondria using electron microscopy.
The MEA Ramsay Research Fund has been funding Professor Julia Newton et al in Newcastle to carry out further work in this area and the results have just been published – an abstract is available in the January MEA website news archive.
The MEA RRF is also co-funding a new study into mitochondrial dysfunction that will be led by Professor Anne McArdle – a leading expert in the study of mitochondrial function – at the University of Liverpool.
I referred to this aspect of ME/CFS research during my interview for the BBC documentary – but I don’t know if it will be included in the final editing.
Newton et al abstract:
Research: loss of capacity to recover from acidosis after repeated exercise, European Journal of Clinical Investigation, February 2012
This study was funded by the ME Association’s Ramsay Research Fund
Eur J Clin Invest. 2012 Feb;42(2):186-94. doi: 10.1111/j.1365-2362.2011.02567.x. Epub 2011 Jul 12.
Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study.
Jones DE, Hollingsworth KG, Jakovljevic DG, Fattakhova G, Pairman J, Blamire AM, Trenell MI, Newton JL.
Institute of Cellular Medicine Newcastle Magnetic Resonance Centre Institute for Ageing and Health The UK NIHR Biomedical Research Centre in Ageing and Age Related Diseases Newcastle Centre for Brain Ageing and Vitality, Newcastle University, Newcastle, UK.
Abstract
BACKGROUND Chronic fatigue syndrome (CFS) patients frequently describe difficulties with repeat exercise. Here, we explore muscle bioenergetic function in response to three bouts of exercise.
METHODS A total of 18 CFS (CDC 1994) patients and 12 sedentary controls underwent assessment of maximal voluntary contraction (MVC), repeat exercise with magnetic resonance spectroscopy and cardio-respiratory fitness test to determine anaerobic threshold.
RESULTS Chronic fatigue syndrome patients undertaking MVC fell into two distinct groups: 8 (45%) showed normal PCr depletion in response to exercise at 35% of MVC (PCr depletion >33%; lower 95% CI for controls); 10 CFS patients had low PCr depletion (generating abnormally low MVC values). The CFS whole group exhibited significantly reduced anaerobic threshold, heart rate, VO(2), VO(2) peak and peak work compared to controls. Resting muscle pH was similar in controls and both CFS patient groups. However, the CFS group achieving normal PCr depletion values showed increased intramuscular acidosis compared to controls after similar work after each of the three exercise periods with no apparent reduction in acidosis with repeat exercise of the type reported in normal subjects. This CFS group also exhibited significant prolongation (almost 4-fold) of the time taken for pH to recover to baseline.
CONCLUSION When exercising to comparable levels to normal controls, CFS patients exhibit profound abnormality in bioenergetic function and response to it. Although exercise intervention is the logical treatment for patients showing acidosis, any trial must exclude subjects who do not initiate exercise as they will not benefit. This potentially explains previous mixed results in CFS exercise trials.
© 2011 The Authors. European Journal of Clinical Investigation © 2011 Stichting European Society for Clinical Investigation Journal Foundation.
PMID: 21749371 [PubMed – in process]
Great work, using good diagnostic criteria for ME.
I wonder, was the length of time the subjects had been ill taken into consideration?
The disease progresses, symptoms change over time. It would be interesting to see if the two differing ME (I don’t use CFS – which is a syndrome) groups could be differentiated by duration of illness as well as physiological parameters.
With, of course, the usual caveat of correlation does not mean causation. It would be an easy starting point to look at though.
…Or whether or not onset was gradual or sudden;
Is there an interaction with age or gender or both?
I love the way good science always raises more questions. 🙂
Getting back to Alba doc, I was surprised to learn last week that there are two parts, I had assumed it would be the usual one-hour documentary slot. The Stornoway Gazette gives a good overview, now we know a little more about all the participants (the Mickel website – unsurprisingly, perhaps – makes the prog seem like an advert for MT). I am delighted that Prof Behan is appearing in the same episode (part two) that follows a day in the life of Dr Mickel.
I just looked up Dr M, I knew he wasn’t actually into false illness beliefs, but I didn’t know he was opposed to the theory of ME being triggered by a virus. That truly astounds me. They asked me when filming what I thought ME was: I replied that I know beyond doubt that Coxsackie B4 – or, at least, my abnormal immune response to Coxsackie – caused *my* illness. I was 100% well, then I wasn’t. One day out of the blue, severe gastric symptoms, followed week after week by one hellish symptom after an other until I was bedridden.
Something catastrophic occurred and I have never recovered (though I foolishly overdid things, pushing myself to ‘recovery’, how I wish I could turn back the clock!).
As I often say, these days, I am moderate with severe dips, but I constantly feel as if there is inflammatory behaviour somewhere in my body. The only treatments to help me when I was severe were ACTH injections and, later, intravenous vitamin C (neither from Prof Behan, incidentally). Under Prof Behan, I had a plasma exchange with immunosuppression. Initially, I felt worse, but after 6 months I began to improve slowly (though relapsing catastrophically, a few years later when I stupidly moved to London to look for p/t work).
I do sometimes wonder if the plasma exhange helped, but in a microscopically slow manner. And Prof Behan was/is still a hero, he diagnosed me where others had failed spectacularly.
I hope the documentary features at least one severely ill patient – it is so important the public gets to see just how devastating ME is. But I know how daunting it must be to be filmed when you have severe ME, and I am not sure who would feel robust enough to take part. But I still have no reason to doubt that it will be a fair and balanced documentary. The proof will be in the pudding.
Dr Charles Shepherd
Is no one researching the link up with ME and Lyme disease. A lot of ME patients have been tested privately for Lyme and were positive. There is a gov cover up regarding both ME and Lyme along with David Kelly -A germ warfare expert. The gov had secret papers on ME that could not be read for 20yrs but when the gov would not allow David Kellys papers to be read for 70yrs the gov changed ME secret papers to 70yrs-a bit suspicious methinks. One has only to read the research by Prof Donald Scott, Prof Garth Nicolson to realise something is very wrong. I urge everyone that suffers from ME/Lyme disease to read the research. It shows the conection between contaminated vaccinations and germ warfare. Gov and scientists have got a lot to answer for!
Dogs ‘higher Lyme disease risk’
In 2010 there were 953 reported cases in England & Wales.
Researchers at Bristol University suspect the problem is even bigger after doing random checks on over 3,500 dogs.
Rates have been going up in recent years.
Never attribute to conspiracy that which can be accounted for by incompetence.
And remember that a man whose salary depends on believing a lie is highly unlikely to be convinced by the truth.
I know Lyme is notoriously difficult to diagnose, I have no doubt a whole load of Lyme disease-ridden folk have been labelled with “CFS” and that they should be properly diagnosed and treated, it should be something that is tested for far more often.
I know the secret documents being held in Kew give rise to a great deal of suspicion and mistrust – and I have signed petitions to have them released.
However;
Rabbitting on about conspiracy theories and aligning ourselves with other conspiracy theorists does not do *our* credibility any good whatsoever.
We need properly diagnosed using the correct criteria, we need good science, from scientists who are competent to practise.
The first part of ‘ME: An Sgìths Nimheil’ /’ME: The Toxic Tiredness’ which was broadcast on BBC Alba last night is now available to watch again at http://www.bbc.co.uk/programmes/b019p6gp
The BBC say it is NOT available for downloading at BBC iPlayer – presumably because of copyright restrictions.
It did lack in showing the true severity of ME. The BBC should air Voices From The Shadows nationally followed by a full Panorama exposure of the whole disgrace that has gone on around the world with regard to ME. I doubt we would ever see that happen though.
I’ve recorded it and have only watched about the first 15 minutes. I found it incredibly disturbing, I was in tears listening to folks’ stories. And they’re no worse than my own – I don’t really cry and get upset about myself any more.
I just get on with what I can do and am grateful for it.
It reminded me *horribly* of how ill and disabled I really am.
Dr. Shepherd, Re. the Newton et.al paper, I see it was the ’94 CDC that were used to diagnose subjects.
I only discovered yesterday that the ’94 version does not emphasise the overriding importance of post-exertional malaise nearly as much as the later version.
Was PEM the major problem all the subjects had? If it wasn’t, the subject group could well be a mixed bag of conditions.