Friday, 26 November 2010

I Remember ME - A Documentary About ME/CFS

This is a documentary was made in 2000 by Kim Snyder and tells the story of the outbreak of a disease at Lake Tahoe in 1984-85 which the CDC failed to recognise as myalgic encephalomyelitis, and ended up renamed Chronic Fatigue Syndrome. The renaming of this disease has led to much patient suffering as the name trivialises a serious neurological illness. In this documentary you will get to hear the testimony of many of the people who were involved in the Lake Tahoe outbreak. I have decided to put this on my blog as it provides a very important history of what happened and why we are in the current mess we're in.

 Part 1



Part 2








Part 3







Part 4







Part 5








Part 6








Part 7





Part 8




Sunday, 10 October 2010

Professor Malcolm Hooper Writes To The Secretary of State About The PACE Trials

Futher request for action re the MRC PACE TRIAL. (HIGH IMPORTANCE....please repost)

This is the letter which was sent by Professor Malcolm Hooper,on the 7th October, to The Rt Hon Dr Vince Cable MP, Secretary of State with responsibility for the Medical Research Council(MRC), relating to the failure of the MRC to respond t......o his formal complaint on the PACE Clinical Trial, which he first lodged on the 11th February 2010. May be reposted.

The Rt Hon Dr Vince Cable MP
Secretary of State
Department for Business, Innovation and Skills
1, Victoria Street
London
SW1H 0ET

7th October 2010

By Special Delivery

Dear Dr Cable,

re:Complaint about the MRC PACE Trial on "CFS/ME"

Mindful of your record of commitment to and concern about the serious plight of people with the neuroimmune disorder myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), I ask that in your position as Secretary of State responsible for the Medical Research Council (MRC), you will respond promptly and fully to this letter.

Having received no response from the Medical Research Council to our concerns about the PACE Trial that purports to be studying this disorder, on 11th February 2010 I lodged a detailed complaint with the Minister then responsible for the MRC, The Rt Hon The Lord Drayson, enclosing a bound copy of my 442 page fully referenced report "Magical Medicine: how to make a disease disappear" setting out the evidence that forms the basis of my complaint.

He replied by letter dated 8th March 2010 (his reference being 2010/0013270POLD), advising that I should raise the matter formally with Dr Morven Roberts of the MRC Clinical Trials Unit, which I duly did by letter dated 30th March 2010, with which I enclosed a further bound copy of my report.

I specifically asked Dr Roberts for an informed and considered response and not the standard and dismissive pro forma MRC letter that has been sent to numerous people who have already written to the MRC expressing their concerns about the inappropriateness of the PACE Trial, the false beliefs of the small but influential group of psychiatrists upon which it is predicated, and its very real potential for iatrogenic harm.

My letter and the accompanying report were sent by Special Delivery and were received by the MRC on 1st April 2010, for which the Royal Mail provided a signed receipt.

I did not receive the courtesy of an acknowledgement, so six weeks later, on 18th June 2010, my research assistant telephoned the MRC and asked to speak to Dr Morven Roberts. When my assistant explained that the enquiry related to my formal complaint about the PACE Trial, she was informed that there was no-one of the name of Dr Morven Roberts in the Clinical Trials Unit and was met with a total refusal to discuss the matter, the MRC employee saying: "I think I'm going to have to put the phone down", which she rudely did. The episode was a quite extraordinary response to a simple and polite request to speak to Dr Morven Roberts in relation to a complaint about an MRC trial.

The following day, Dr Morven Roberts sent me an email (incorrectly addressed to Professor "Cooper") in which she wrote: "I understand you have recently tried to contact me in regard to your complaint lodged with me as Clinical Trials Manager about the PACE Trial. I can let you know that the MRC are working through the large document you have sent and will respond in due course. Morven".

Despite it being over six months since I lodged my complaint and four months since Dr Morven Roberts assured me I would receive a response, I have heard nothing from the MRC. I am sure you will agree that such a delay in such an important matter is unacceptable.

On 5th October 2010, my research assistant telephoned your Department, quoting the reference number on Lord Drayson's letter of 8th March 2010, to seek your personal commitment to pursue this issue as a matter of urgency, only to be informed that there is no record of my complaint as Lord Drayson's reply to me has been lost and that I must start my complaint all over again. She was informed that someone from your office would ring her back that same day; you may not be surprised to know that no-one bothered to do so.

Reasons why this complaint is now urgent

The MRC PACE Trial intentionally used the Principal Investigators' (PIs') own entry criteria for "CFS" (the 1991 Oxford criteria), yet these criteria lack diagnostic specificity, have been shown to have no predictive validity, and select a widely heterogeneous patient population which may or may not include people with true ME/CFS. It is virtually unheard of for studies to use criteria that have been superseded; indeed, one of the PIs himself, Professor Michael Sharpe – who was lead author of the Oxford criteria -- stated in 1997 that they "have been superseded by international consensus" (Occup Med 1997:47:4:217-227).

Of equal concern is the fact that the PIs and other psychiatrists involved with the PACE Trial continue to regard ME/CFS as a behavioural disorder and refuse to engage with the extensive biomedical and scientific evidence that identifies damage, deficits and dysfunction in major bodily systems of patients with ME/CFS, particularly in the neurological, immune, endocrine and cardiovascular systems. For over two decades they have asserted that ME does not exist (and that it is merely an "aberrant belief" that one has a disorder called ME); they equate it with chronic "fatigue", a completely different disorder classified by the WHO as a psychiatric disorder in ICD-10 at F48.0, whilst ME/CFS is classified as a neurological disorder at ICD-10 G93.3.

The potentially harmful results of the PACE Trial for those with ME/CFS are particularly important in the light of the findings of the strong association between ME/CFS and a retrovirus (XMRV) of the same family as HIV/AIDS. The findings of that paper, published one year ago in the journal with the highest impact factor of any scientific journal worldwide (Science 2009:326:585), have been confirmed and strengthened by further research published in August 2010 in the Proceedings of the National Academy of Sciences (PNAS 10.1073/pnas.1006901107) showing polytropic murine leukaemia virus-related viral sequences (MLV) to be present in the blood of 86.5% of patients studied.

The over-riding international concern is that when the PACE Trial results are eventually published, they will deliver what has long been known to be the PIs' intention and primary objective, ie. the results will confirm the PIs' favoured intervention of "cognitive restructuring" (which incorporates graded aerobic exercise) as the intervention of choice. This is an intervention that is specifically designed to disabuse ME/CFS sufferers of their (correct) perception that they suffer from a serious, multi-system neuroimmune disease.

The cognitive modification is directive, not supportive, ie. it is not offered as adjunctive psychological support for those dealing with a life-wrecking illness because the PACE Trial Manuals claim that it is curative: the chief PI, Professor Peter White, claims that "a full recovery is possible" (Psychother Psychosom 2007:76(3):171-176); the participants' CBT Manual informs people that the PACE Trial therapies are curative, and it is asserted that "many people have successfully overcome their CFS/ME" with such behavioural interventions ("Information for relatives, partners and friends", page 123).

To recommend behavioural modification strategies for those suffering from such devastating organic illness would be inhumane and inexcusable: if such an intervention were to be imposed on those with other neurological diseases (such as motor neurone disease or multiple sclerosis) to force them to change their correct perception that they suffer from a serious organic disorder, it would be roundly condemned as unethical.

You may already be aware that a world expert on both HIV/AIDS and ME/CFS is on record as stating:

"I hope you are not saying that (ME)CFS patients are not as ill as HIV patients.I split my clinical time between the two illnesses, and I can t......ell you that if I had to choose between the two illnesses I would rather have HIV" (Nancy Klimas, one of the world's foremost AIDS and ME/CFS physicians; Professor of Medicine and Immunology, University of Miami; New York Times, 15th October 2009). In addition, in a radio interview on 19th September 2010, she stated: "…there is a chronic inflammation, neuro-inflammation, and it upsets the whole balance of your systems…the patients become terribly ill…. The immune system is really cranked up; it's a tremendous amount of inflammation. I think that if doctors could get this in their heads that it's sort of like lupus or one of these really inflammatory disorders…it is that level of inflammation. There's a tremendous amount of inflammatory stuff going on, and there's a lot of inflammation in the brain itself" (http://www.litemiami.com/spotlite/index.aspx ).

This is important, because the incremental aerobic exercise recommended by the PACE Trial Principal Investigators is contra-indicated in cases of inflamed and damaged tissues and inevitably results in post-exertional relapse with malaise, which is the cardinal symptom of ME/CFS.

Furthermore, in a lecture on 24th April 2010, Anthony Komaroff, Professor of Medicine at Harvard and another world expert on ME/CFS, said on record in answer to the question whether or not he would consider ME/CFS a neurological illness: "…there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. That makes it neurological…That's why I think it makes sense…to call it Myalgic Encephalomyelitis…because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case" (http://www.masscfids.org/news-a-events/2/221 ).

As the evidence for retroviral involvement in ME/CFS becomes impossible to dismiss, it becomes paramount to prevent the potentially damaging PACE Trial results from being applied nationally to anyone with the label "CFS/ME" who, given the indisputable heterogeneity of the PACE Trial cohort, may have either chronic tiredness for which psychological interventions may be appropriate or a multi-system neuroimmune disorder for which behavioural modification is contra-indicated.

I trust you will appreciate the gravity and urgency of the current situation that adversely affects an estimated 240,000 people in the UK (for comparison, the Multiple Sclerosis Society estimates that there are 83,000 sufferers in the UK) and that your own involvement will be both prompt and efficacious. The situation is particularly pressing now that people with ME/CFS are embroiled with new legislation that many fear – and some have already found – is threatening to remove state benefits they currently receive that are vital to support their severely sick and damaged lives.

It is completely unacceptable that Dr Roberts and the MRC can be permitted simply to ignore this complaint (which has received worldwide academic attention, comment and support) in order to protect the unsustainable beliefs of a handful of psychiatrists who work for the medical and permanent health insurance industry and the scandalous waste of over £5 million, especially given that the effects of the interventions on over 3,000 patients were already known to be at best ineffective and at worst to be actively harmful in 50% of cases (for references, see "Magical Medicine" -- the copy that was sent to Lord Drayson should still be in your Department but I will provide a further copy if necessary).

I ask that you give this matter your urgent attention; that you will intervene to expedite the promised response from Dr Morven Roberts and that you personally will supervise and approve her response.

Yours sincerely,

Malcolm Hooper

cc. Dr Morven Roberts, Clinical Trials Unit, MRC, 20 Park Crescent, London W1B 1AL

Monday, 26 July 2010

The Video - Living Hell: The Real World of Chronic Fatigue Syndrome

I found this video about CFIDs which is the name some people in the USA use for the disease myalgic encephalomyelitis. This video was made in 1993 and documents first the history of the disease from the time of the outbreak at Lake Tahoe, and talks to the doctors and ptients involved. it shows how serious the disease is. What is striking is how little has happened in terms of government and media perception of the disease in the past 17 years, and how a promising treatment called Ampligen was side-lined by the FDA.

 The video has been posted on Youtube, but the order is hard to follow, so I thought I would post them here in the right order.



Liviing Hell: The Real World of Chronic Fatigue Syndrome. Part 1
   





Liviing Hell: The Real World of Chronic Fatigue Syndrome. Part 2






Liviing Hell: The Real World of Chronic Fatigue Syndrome. Part 3







Liviing Hell: The Real World of Chronic Fatigue Syndrome. Part 4







Liviing Hell: The Real World of Chronic Fatigue Syndrome. Part 5





Liviing Hell: The Real World of Chronic Fatigue Syndrome. Part 6







Wednesday, 31 March 2010

I am Feeling Well, But how Long Will It last?

I have very few good days. In fact my M.E. is usually either bad or worse! But very occasionally I get a few days when I feel normal. My gait becomes normal, my myoclonus subsides (involuntary jerking movements), my brain fog goes and my balance improves. I find myself able to do normal things like dig the garden, walk for a mile or two, spend time chatting on the phone etc. I start to wonder if those psychiatrists who say ME/CFS is all in your mind are right. Perhaps I have been kidding myself all along? Perhaps my evil subconscious mind has been playing a wicked trick on me? If someone from the DWP saw me during these short periods they would probably prosecute me for benefit fraud!

But then it happens. It feels as if I have hit a brick wall! The signals to my legs don't get through and my gait deteriorates, my balances goes, my brain starts to feel like mush, my myoclonus comes back with a vengeance, every other symptom returns and I feel terrible. I try willpower, but no matter how much I try I cannot get my legs to move normally. I try positive thinking, but still no good. Then I despair and feel as if I have had a cruel trick played on me.

I am having one of those occasions at the moment. They happen very rarely and only usually last a couple of days, the longest lasted for just over a week. I feel really good. I have been out for long walks, dug the the vegetable garden spent time with my family and feel almost normal. Apart from the occasional myoclonic jerk it seems as if my illness is gone. I am a Christian and believe that God heals people, and on occasions I have thought this is what is happening to me. This makes the crash feel even harder to bear.

The thing about M.E. is it's unpredictability. You can occasionally have periods of remission. For some people they can last for quite long periods, for others like me they only last for a few days, while other never experience this and only ever have ill health. During these times you think you are getting your life back, you start to plan for the future again only to have your hopes dashed. Until I got M.E. I could more or less trust my body. If I wanted to go somewhere I could; if I wanted to meet up with friends it was no problem; if I need to talk on the phone or read a book I could do this without thinking. But M.E. takes this away. You can no longer just do things when you want to. You cannot depend on your body and brain functioning properly. Things that "normal" people take for granted, like walking for instance, you can no longer take for granted as you cannot guarantee your body will work properly. You can't go and meet with friends and be sure you will feel okay or be able to deal with the noise, people moving around or be able to concentrate on what people are saying.

These little remissions remind me of what life was like before I became ill. Things I took for granted become significant. But when it ends the crash is great, and the sense of grief and despair can be overwhelming. So I am going to enjoy this reprieve no matter how long it lasts. I am going to continue to hope that perhaps I am recovering or being healed, but at the the same time try and keep myself from becoming too excited. But that is far easier said than done.

Sunday, 29 November 2009

Imagine...

Imagine what it would be like to feel ill, almost poisoned every single day. The smallest task leaves you feeling weak, nauseas and dizzy - so much so that you have to lie down and rest.

Imagine what it would be like to have to wear a deep sea diving suit complete with weighted boots. But unlike a normal one, the arms are heavily weighted too. Think what it would feel like to have to do your daily tasks in such a suit. Think about walking or doing simple tasks like washing, getting dressed or even cleaning your teeth. Think about how much effort these simple tasks would take and how you would feel as a result of that effort.

Imagine what it would be like to have a body where messages from your brain seem to get mixed up or don't get through at all. Your movements become dis-coordinated, legs and feet don't move in the same way they used to. Your hand writing is more difficult and labored. You try to move but you can't.

Imagine what it would be like not to be able to sleep even though you are tired. Any sleep you do get is disrupted and not restful. You wake up feeling ill and as bad as you did before you fell asleep.

Imagine what it would be like to have painful muscle spasms sometimes involving many parts of your body. Sometimes they are not painful but the rippling and buzzing sensations make it hard to get comfortable.

Imagine what it would be like not to be able to even have a light on in your room as any light seems as bright as looking directly at the sun. The burning sensation is so unbearable. You have to wear dark glass because light is unbearable. Going outside to enjoy the sun is just a dream.

Imagine what it would feel like not to be able to spend time with family and friends because you cannot process what is going on. Every noise sounds as if it has been amplified a hundred times. People moving around leave you feeling dizzy and disorientated. The longer you stay the worse it feels. You love to be with them, but the experience leaves you feeling ill.

Imagine what it would feel like to have lots of time but be unable to even read a book. Your brain is so foggy that you cannot remember the paragraph you have just read. You may manage small periods of reading, but again you feel ill and have to rest. Learning anything new becomes more difficult. Your brain just doesn't work as well as it did.

Imagine what it would be like to have constant bowel and urinary problems. You either constipated or have diarrhea. You need to make frequent visits to the bathroom throughout the day. Even if you are able to go out, you have to plan in case you get caught short.

Imagine what would be like to struggle to speak. Your words come out stuttering,disjointed and sometimes slurred. Your voice falls to little more than a whisper. You go to say something but you cannot find the right words. It is as if your mouth vocal cords and brain no longer coordinate properly. If you speak too long you feel ill.

Imagine what it would be like to have your illness to be trivialized by the medical profession. Many think you are making it up or have psychiatric problems.

Imagine what it would be like to have an illness where even good scientific research is disregarded by the medical profession and the establishment. Either through prejudice, disbelief, the desire not to frighten the public or because it will cost the government and insurance companies too much money if your disease is acknowledged.

If you can imagine these things you are somewhere towards understanding what it feels like to have M.E.

Friday, 27 November 2009

Finding The Right Words - Using The Right Images

It has been a long time since I posted anything on this blog so I thought it was about time I started using it again. I need somewhere to share my thoughts even if no one reads it!

I have been thinking about communication, especially in relationship to ME/CFS . You may not think this is a very important subject, but how we communicate what is happening to us, regarding this disease, is very important. ME/CFS has been given very bad press over the years. The terms 'Yuppie flu' and 'Chronic Fatigue Syndrome' have trivialized it's seriousness. But I also think people with ME/CFS haven't always helped themselves in the way they have communicated what is happening in their bodies.

The problem with language is the same word can mean different things to different people. The word 'fatigue' is very problematic. Does it mean being sleepy or tired? What images does it conjure up in our minds? Is it that nice feeling you get after doing a good days work or is it the type of feeling that leaves you totally drained and unable to function. Even the term 'lack of energy' isn't without it's problems and I am not sure it goes anywhere near explaining ME/CFS symptoms. It is still very imprecise. Most people in our modern industrialized society feel they lack energy and most people also have times when they feel tired all of the time. People interpret language through the lens of their experiences. Someone who is healthy will interpret the words 'fatigue' or 'lacking energy' one way; whereas someone with a chronic illness will interpret it quite differently.

But communication is far more than just words. Images also play an important part in the communication experience. The problem with ME/CFS is it is often an invisible illness. One can have ME/CFS and look perfectly healthy. ME/CFS charities often, unwittingly, use images that reinforce the idea that ME/CFS is about being 'sleepy' or being 'tired all the time'. Images of people in bed or in their night clothes, just reinforces in people's minds the idea of being lazy or sleepy. They rarely convey the idea, at least to me, of being sick. People with ME/CFS are often depicted in bed, in darkened rooms with sunglasses on without any explanation of why they need to be in a darkened room or wear sunglasses all the time. Rarely are pictures shown of people who are tube fed or struggling to walk or having convulsions or with the ghostly pallor that happens just before a crash. These more visible aspects of ME/CFS are rarely depicted. It is also interesting how most of the people in pictures used by ME/CFS charities are female. It may subconsciously be reinforcing the idea that ME/CFS is female 'hysteria'. The fact is ME/CFS is not gender specific. Although, like many neurological conditions, there are more women who have ME than men, men do get it. Rarely too do you see people from ethnic minorities depicted, again reinforcing the idea that this is a white, mainly middle-class illness.

Please don't misunderstand me. Many people with ME/CF, especially the severely affected DO spend most of their time in bed, in a darkened room wearing sunglasses - but using pictures without an adequate explanation can convey the wrong impression to those who have no idea what ME/CFS feels like. There is a real need for ME/CFS activists and charities to think through what their communication is actually saying rather than what they think it is saying.

I personally do not like using the words 'fatigue' or 'tired', or the phrase 'lacking energy 'because I do not think they convey just how bad ME/CFS feels. The problem is there isn't really one word that can convey how it feels to have it. I do not feel tired or fatigued as most people understand it, I feel ill. Poisoned even. And the more I push myself the more ill and more poisoned I feel. It is true my muscles tire very quickly affecting my gait (although that is very rarely good to start with), my voice, my movement, my eye sight and my speech. It is also true that my I become mentally foggy very quickly, but the over-riding feeling is one of feeling very ill. Activity exacerbates my symptoms. I get worse headaches, worse involuntary movements, worse visual disturbances etc. I do not feel tired or sleepy in the way most people mean those terms, I feel ill. Being disabled is one thing; being disabled and feeling constantly ill is quite another.

So in summary what i think we need to do is to think about how we communicate about our illness to others. How might the words and images we use be interpreted by those who haven't experienced this disease? Trying to find the right words and images to convey the seriousness of our disease isn't easy, but it is worth our best effort if we are ever to be taken seriously.

Tuesday, 6 November 2007