Update on the “Secret” Files on ME + Wessely and the Wok?
IMPORTANT UPDATE 2015: you can now download the files directly from my more recent posts – The Secret Files Unwrapped Part 1 (DWP file) and The Secret Files Unwrapped Part 2 (MRC file).
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I have finally received all of the results of my appeals regarding the redacted information in these files so it is now possible to do a wrap-up of this topic.
The story so far of my work on these files can be found in my post The “Secret” Files on ME but here is a brief re-cap:
For several years, there had been considerable speculation and rumour surrounding some “secret” files on ME, the illness I have lived with since 1981, which is also known, unhelpfully, as “chronic fatigue syndrome/CFS” or “ME/CFS”). These files are held in The National Archives (TNA) at Kew in London, UK.
In September 2011 I used the Freedom of Information Act of 2000 (FOIA) to see if the files could be opened up. It transpired that there were two files – one from the Department of Work and Pensions (DWP, formerly known as the Department of Social Security – DSS) and one from the the Medical Research Council (MRC).
The files contain documentation about ME (and “CFS”) – correspondence, notes of meetings, background material, details of benefits claims and research applications. Both files had been reviewed and archived in the normal way during the 1990’s. Because each file contained information which was properly exempt from disclosure under the Act, they were closed to the public until 2072 (DWP) and 2071 (MRC). NB: contrary to some rumours, the Official Secrets Act was NOT a part of this process.
I took the DWP file through several stages of appeal and in April 2012, it was opened up albeit with some redactions (see the decision notice of the Information Commissioner’s Office here). However, the MRC file was already open and had been since 2007. It was available online via TNA’s website for anyone to read. In other words, it had been incorrectly referred to as “secret” for five years. There were some redactions but the file was open.
So, again, contrary to some rumours, the files were never “secret”. They simply contained confidential information. Any public authority covered by the Act is under a statutory duty to protect sensitive personal data and information given in confidence relating to ALL individuals.
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Since April 2012, I have appealed against the decisions to redact in both files and this is where I am now:
The DWP File
More of the file (reference BN/141) has been opened up as a result of my appeals. At the moment, I am not strong enough to go to Kew again and inspect each individual change but I have been sent a schedule of the changes. As I have a hard copy of the original file, I have been able to work out approximately what else has been revealed. There is still some redacted material but considerably less than before.
It would be fair to say that most of the file is now publicly available. In particular, more of the large portion of redacted material towards the end of the file (64 pages) has now been opened up. I believe that this section contains details of benefit claimants’ applications which obviously contains sensitive personal data. This has now been put back but with some parts still redacted to protect the privacy of these individuals.
My view, both personal and professional, is that enough of this file is now available that to spend further time, energy and money pursuing the final missing sections would be pointless. Most of what remains redacted will never be opened up as it reveals personal details of individuals who are probably still alive. This means that TNA has no discretion to release the information as it would be in breach of its statutory duty under the Data Protection Act 1998.
The MRC File
This file (reference FD/23/4553) was opened in 2007 (I don’t know what prompted that) and then reviewed again in 2010, after which more information was released. This is the relevant extract from TNA’s reasons for continuing to withhold some information relating to medical research proposals:
“In 2010-11 the MRC, appreciating the huge public interest into scientific research on ME, undertook a consultation exercise with the principal researchers. Following this consultation exercise a further 12 pages (see dummy card number 6 on FD 23/4553) were reunited back into the open piece to include details of the research applications (some of which includes the names of researchers). The released material relates to those who have agreed to their research proposals (abstracts) and identities being published. Section 41 therefore still applies to the remaining abstracts, four of which were redacted to remove the names of the investigators and eight which have been withheld.
To establish where the public interest lies a balancing test is required, however, as stated above there has to be a compelling argument for the public interest defence to outweigh the public interest in protecting confidence. Article 10 of the Human Rights Act 1998 (right to freedom of expression) considers the importance of protecting information provided in confidence:
“The exercise of these freedoms, since it carries with it duties and responsibilities, may be subject to such formalities, conditions, restrictions or penalties as are prescribed by law and are necessary in a democratic society
………preventing the disclosure of information received in confidence”.
It is recognised that the public interest in favour of disclosure includes such factors as transparency and accountability and that it is important for the public to understand the decisions that public authorities undertake.”
In other words, the redacted portions of this file either contain:
- sensitive personal information of individuals who are likely to still be alive, or
- information given in confidence as part of research funding applications and it has not been possible thus far to obtain consent from all the original researchers for that information to be released.
I think it is most unlikely – as with the DWP file – that any further useful information would be released if the decisions regarding this file were to be appealed further. The information in the file is almost 20 years out of date now. Anyone who wishes can pursue the redacted contents by using the FOIA process themselves. It is important to remember that a huge amount of information is already available from these files now.
Viewing the files
I was already well aware of the views expressed by various members of the medical profession regarding ME and its patient population. Nevertheless, I still find the contents of these files to be deeply shocking to read.
If anyone wishes to read a small sample of what is in the MRC file, then I suggest looking at the first document contained within it – the highlights (sic) of the CIBA Foundation Symposium on Chronic Fatigue Syndrome in May 1992 (4 pages). It is 20 years old; very little has changed since then, apart from better marketing and reinforcement of the imappropriate psychosocial model of treatment (at the expense of resources which should be directed towards biomedical research and treatment). The fourth page contains this illuminating statement:
The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability (my emphasis).
It is important to bear in mind that many ME patients do not even class fatigue as a symptom of the illness but merely as an inevitable side-effect, as happens in many illnesses. Most medical professionals, on the other hand, focus only on fatigue and disregard the many other symptoms of the illness which point towards a multi-systemic disruption of the body which affects the neuro-immune and related systems in particular.
If you wish to view the MRC file then you can do so online at TNA’s website via the process set out below. Unfortunately, the DWP file doesn’t appear to have been digitised as yet so can only be viewed by visiting TNA. I will review this again in due course.
UPDATE – May 2014: the site has been upgraded and is now much more user-friendly. To find details of the files just go straight to the “Catalogue” section of the TNA’s website, enter the file reference (BN/141 or FD/23/4553) and you should be directed to the front page which displays the file information. The DWP file has still not been digitised but you can make a notional “purchase” of the MRC file and download it at no cost although you will need to supply your email address (but see the update at the top of this post directing readers to later posts from which both files can be downloaded directly from this blog.)
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What next?
My view is that it is now of more use to focus on establishing what other routes might be pursued to achieve proper recognition and treatment for ME patients (possibly by making use of what is already available in the files) rather than chasing up the small amount which remains closed. Working on those other areas is a slow and painful process for all of us who are working within the extreme limitations of our illness. Perhaps the odd fundraising run now and then, just as a little GET (graded exercise therapy), you understand; nothing too stressful. No? I thought not. Because we can’t.
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Elsewhere in the news…..
From the website of Sense about Science comes the exciting announcement of their 2012 John Maddox prize for Standing up for Science:
Simon Wessely, Professor of Psychological Medicine at King’s College London, is awarded the Prize for his ambition and courage in the field of ME (chronic fatigue syndrome) and Gulf War syndrome, and the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues.
Simon Wessely is prominent amongst the architects and proponents of the psychosocial model of “treatment” for ME patients. Apparently, he has shown outstanding bravery for standing up to death threats and abuse from dangerous people like me. Be afraid, Simon – be very afraid. I’m a middle-aged woman with a wok and I am very dangerous.
The press release fails to point out (as, sadly, did the Lancet and the New Scientist publications) that Professor Colin Blakemore, one of the four judges, is a long time supporter of the persecuted Professor Wessely and that Professor Wessely is himself on the Advisory Council of Sense about Science. So the award appears to be more for outstanding cronyism than anything else. I imagine that Dr Clare Gerada, chair of the Royal College of General Practitioners, is also delighted by the award – in her other capacity as Mrs Simon Wessely. Woks at dawn, Clare? Or perhaps Simon is quite handy with oriental kitchen utensils himself? We’ll probably never know.
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Other challenges
Whilst I have been in the process of writing this piece (it takes me a long time), two new issues have arisen. The first was a brief discussion on Facebook regarding legal challenges and ME; the second was a direct personal challenge regarding ME issues from an old friend who is a highly respected hospital consultant. The second of these was a pretty upsetting experience but has forced me to give further thought as to how we go about tackling the endemic prejudice against ME patients in otherwise well-meaning individuals. However, as it takes me a long time to write each post (and leaves me considerably weaker each time) I will address those issues in a later posting.
Ice cream and hypothermia: a very personal story
When I was a child, living in Australia, I needed to have my tonsils removed. I was nine years old; I had been ill for quite some time and was very frightened at the idea of surgery. Everyone said to me that it would be fine and I would get lots of ice cream afterwards to cheer me up and make my throat feel better.
I had the operation. I was in hospital for four days and caught a cold because the nursing staff insisted on leaving a window open next to my bed. I felt terrible and my recovery was slow. And I never got any ice cream.
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We have just had our first bout of cold weather here in London. I have come to dread this time of year as I now have a tendency to become clinically hypothermic in a very short space of time.
I have been through a total of eight operations in my life so far. Five of these took place between 2004 and 2008. The second of those was in February 2005. I was admitted to hospital in London for the umpteenth time with acute, unexplained symptoms, on the day after the funeral of my closest friend. After a week of being unable to take in any food or liquid, I was very weak and in great pain. In desperation, my consultant (whom I knew well by this time) decided to open me up for the second time – and this wasn’t the last time he had to do this. He emphasised that I might not survive the surgery.
The operation turned out to be simpler than anticipated but I experienced severe surgical trauma because of my weakened state. My body temperature plummeted to around 31 degrees celsius (normal body temperature is around 36.8 degrees). My heart was doing some strange things too. I began to regain consciousness at this point and I remember shivering violently and uncontrollably for more than an hour while the nursing staff gradually brought my body temperature back to normal and my heart settled. My recovery from this operation was slow and tortuous. On the day of my operation, the partner of my dead friend checked into a hotel and killed himself. I had been powerless to comfort him in his grief.
A few weeks later, I tried a short walk outside for the first time. The weather was cold and I began to feel unwell quite quickly. When I got home, I checked my temperature as I thought I might be coming down with a post-operative infection. To my surprise, it wasn’t high: it was low – hypothermically so (ie. below 35 degrees) – although I had been outside for only a short time.
And so it has remained ever since. My personal thermostat was blown. I am mostly OK in temperate climates but even the generally moderate temperatures of a normal British winter are enough to cause me significant problems. If I am outside for more than a few minutes, my core body temperature drops very quickly. It can even happen inside, if the heating is inadequate.
I have discussed this problem with various doctors. No one can explain why it happens and actually no one is very interested, as I’m clearly still alive and apparently functioning “normally”. The fact that I have to manage this problem throughout the winter months by only staying outside for very limited periods of time – well, that’s just too bad. But each time it happens, a little more of my precious energy is sapped and my already restricted life with Myalgic Encephalomyelitis (ME) feels even more depleted.
If I stay out for too long, I begin to enter a catatonic state whereby I lose awareness of what is happening; at this point it can become dangerous. I then have to very deliberately monitor myself and everything that is happening around me and get myself back into a warmer environment as quickly as possible. No amount of extra clothing prevents this from happening.
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In October 2008, I was back in hospital for my eighth operation. This was a second attempt at correcting a cardiac arrhythmia, an earlier try having been unsuccessful. After the previous failure, I was paralysed with fear as the first experience had been truly awful and my recovery – such as it was – painfully slow. Yet again, I checked my will and the memorial service which I had prepared three years earlier. And again, my husband and I exchanged our words of farewell.
This time, however, I discussed my situation with the surgeon (whom I shall call “Tom”) and the anaesthetist. It was the same team as in the previous attempt so I already knew them. I explained to Tom about the hypothermia problem and queried the fact that operating theatres were always, in my experience, so cold. Tom confirmed that there was no clinical need for the temperature in the theatre to be kept so low and promised that he would ensure that a higher temperature was maintained throughout the procedure. I also requested that he would stay on afterwards, until I had come round in the recovery room (which is a lonely and terrifying place), so that he could tell me personally how it had gone. He agreed.
Somehow, I persuaded my legs to carry me into the theatre. About three and a half hours later I began to come round in recovery; Tom was there, waiting, as promised. I then did what I always do after an operation and promptly burst into tears, my standard response to surgical shock. I knew that Tom was emotionally reserved and not inclined towards displays of sentiment but I urgently needed reassurance. I held out my hand (because of the anaesthetic, I was still unable to speak at this point). He took it immediately and held it for a few minutes and told me that all had gone well. The comfort which I derived from this simple act of humanity was indescribable.
This operation was successful and I recovered rapidly. I later learned that, despite the fact that the theatre staff were roasting, Tom insisted that a warm temperature be maintained to reduce the risk of my becoming hypothermic again. He had kept his promise.
Since this last operation, I have been left with significant cardiac discomfort but the dangerous condition has been alleviated. I had hoped that perhaps my ME symptoms might also improve as a result but they have actually been exacerbated by the trauma. It had been impossible to evaluate those symptoms objectively in the preceding years because of all the other acute, ongoing problems. I had allowed myself to entertain the possibility that the ME (which I have lived with since 1981) might have improved; however, it was not to be. I now also live with the permanent legacy from so much surgery – including the hypothermia.
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After that final operation in 2008, I was out of the recovery room and back in my own room within a couple of hours. Sarah, the Australian nurse who was taking care of me, asked me if I was hungry.
And so, after forty-two years, I finally got my ice cream.
Occupy CFS* – a blog you must read
* UPDATE July 2016: Jennie has now renamed her blog “Occupy M.E” to better reflect the nature of our illness. You can read more at http://occupyme.net
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I’m copying below a recent entry (17 October 2012) from this outstanding blog http://www.occupycfs.com/ written by US advocate Jennie Spotila; Jennie has lived with ME/CFS since 1994. I asked for her permission to reproduce this post here in full. If you have ANY concern for people living with this illness then please check in with her blog occasionally.
Finally, a further brief reflection on Malala Yousafzai, the 14 year-old Pakistani girl shot by the Taliban because she campaigned for the right for girls to be educated: looking at the number of inspirational blogs from educated girls/women from around the world, it is abundantly clear that we are indeed “all Malala”. Jennie Spotila, Martha Payne – the Scottish schoolgirl who blogs about her school dinners to raise funds for less privileged children worldwide (see link here) and so many others. We are all of us – at some time in our lives – a “Girl with a Book” (see my previous post “October“).
Here is Jennie’s recent blog post:
“This. Is. Why.
I’m on the verge of tearing my hair out, and I suspect I’m not the only one. The American Academy of Family Physicians published a review article about CFS (paywall) on Monday, accompanied by a patient information sheet. From the very first sentence, this information sheet is a disaster. It packages harmful misinformation for family doctors to share with patients. Let’s take a look:
Chronic fatigue syndrome (CFS) is a disorder that causes you to be very tired.
NO! No it does not! A person with sleep apnea is tired. A nursing mother is tired. A perfectly healthy person studying for the bar exam is tired (ask me how I know). CFS does not make me tired. CFS causes prostration, a medical term that means a collapse from complete physical or mental exhaustion. Using the word “tired” is not only medically inaccurate, it falsely minimizes the severity of my disease and my experience.
People with CFS may have other symptoms, such as poor sleep, trouble with remembering things, pain, sore throat, tender lymph nodes, or headaches.
Can you spot what’s missing? Post-exertional malaise! The generally accepted hallmark symptom of this disease is not on the list. It is the first symptom on the Fukuda criteria list of accompanying symptoms. But it’s not listed here and not explained to the patient.
Not everyone with CFS has all of these symptoms.
I know hundreds of CFS patients. Every single one of us has experienced these symptoms for extended periods of time, if not daily, over the course of years. While it is technically correct that the Fukuda criteria do not require all of those symptoms, it is an oversimplification to simply say we don’t have all the symptoms. And of course all the other symptoms and overlapping conditions are not mentioned at all.
Childhood trauma (for example, physical or sexual abuse) may raise the risk of getting it.
I am aware of two studies that showed a higher prevalence of childhood trauma among CFS cases compared to healthy controls (this one and this one). Here’s the problem: childhood trauma may raise the risk of many disorders later in life. Without comparing the prevalence rate of trauma among other illness groups, there is no way to know if the association with CFS is unique. Are there studies comparing the incidence of childhood trauma among people who develop multiple sclerosis, rheumatoid arthritis, cancer, hepatitis, heart disease or . . . oh, that’s right. Doing that kind of study in those illnesses might be offensive because those illnesses are real. But we can do those studies in CFS with no problem.
Two treatments can help with CFS: cognitive behavior therapy (CBT) and graded exercise therapy. With CBT, a therapist teaches you about how your thinking affects how you feel and act. With graded exercise therapy, you slowly increase your physical activity, which hopefully increases your function.
You know where this is going, right? Setting aside the arguments about whether CBT and GET studies actually show a benefit, and setting aside how this sort of statement plays right into the mental illness meme, let’s talk about GET. Will GET increase CFS patients’ functional ability? Maybe some patients, but it should be pursued with extreme caution and prejudice. As the work of the Pacific Fatigue Lab and my own exercise testing results show, the energy metabolism systems of CFS patients are severely impaired. We do not make or use energy, or recover from activity, the way other people (including other illness groups) do. Graded exercise must be undertaken very carefully because it takes very little activity to push a patient into a severe crash.
I shudder to think about how family doctors will use this information sheet, and what it will do to the patients who receive it. What is truly remarkable about it is that it bears only a passing resemblance to the full review article and the AAFP’s patient education page on CFS. But this watered down, oversimplified summary of misinformation about CFS will undoubtedly be used, and it is likely to make things worse for patients, not better.
So does anyone – journalists, doctors, policymakers, or other observers – wonder why the CFS Advisory Committee and patient advocates have been begging CDC to fully revise its website and remove the harmful content that filtered into this information sheet?
This is why.
Does anyone wonder why the CFSAC recommended that the CDC remove its Toolkit from the CDC website?
This is why.
Does anyone wonder why an alliance of organizations and patients wrote a lengthy and heavily referenced position paper in support of that recommendation?
This is why.
Does anyone wonder why there was such vigorous disagreement at the CFSAC meeting about whether professional societies like the AAFP should be invited to participate in revising the CFS case definition?
THIS. IS. WHY.
Categories: Advocacy, Commentary Tags: biomarkers, case definition, CBT, CDC, CFSAC, CPET, DHHS, exercise, GET, government, orthostatic intolerance, pacing, pain, pathogenesis, politics, post-exertional malaise, psychosocial, risk, speaking out, treatment”
Thank you to Jennie for this. And, as ever, thank you to those of you who have read this far. I wish you all well.
October
I had intended to write a more substantial post but my health has taken something of a nosedive in the last week. This was fairly predictable, given the amount of extra activity I’ve been undertaking – but it’s still depressing. As a result, I’m going to do a short update – just to keep the blog alive and kicking. Incidentally, I do regular mini-updates via my Twitter feed which can be found in the lower part of the sidebar on the right of this blog.
The worsening of my ME/CFS symptoms means that my general pain levels are up and my energy is even further down. My brain is desperately struggling with any cognitive effort and my body is weak, shaky and pulsating with neuropathic discomfort. My cardiovascular system is in overdrive which is unpleasant and periodically alarming. An inflamed throat/sinuses, headache and mild nausea come and go intermittently along with a sense of increased real/perceived activity in my immune system. My body temperature fluctuates wildly between hot and cold and occasionally it is hard to breathe. However, this is all pretty normal for someone with ME/CFS and I’m not actually bedridden at the moment – so it could be worse.
Recent developments in ME/CFS
The main story is that British doctor, Dr Sarah Myhill, who treats patients using mostly complementary medicine, has retained her licence to practise medicine. In 2010, a complaint was made about some of the content on her website which resulted in a disciplinary hearing before the GMC (General Medical Council). The GMC’s determination was published recently: Dr Myhill has received a formal warning but can continue to practise. This has come as a great relief to her patients who feel that she is one of the few doctors in the UK to take ME/CFS seriously. (I am not a patient of Dr Myhill’s.)
In the US, there is perhaps encouraging news that President Obama’s staff will be monitoring the Department of Health and Human Services’ activities in relation to ME/CFS (link here). Let’s hope that this is for real and not just electioneering.
In the media generally, argument and counter-argument continues between journalists/bloggers and ME/CFS patients both in articles and via correspondence from patients.
Requests under the Freedom of Information Act
I will write a full update on my own FoIA applications regarding the redactions in “The ‘Secret’ Files on ME/CFS” (see August 2012 Archives in sidebar) when I feel stronger. The judgment on the Department of Work and Pensions (DWP) file has been published on the Information Commissioner’s Office website (read here). Paragraph 26 is of particular importance. As you will see, there is some further redacted material to be made available although not all of it. When I know more, I will update here and do a fuller assessment of the status of the files.
I have noticed that many people are still referring to these files as “secret”. This factually incorrect and very misleading. The files are open to anyone who wishes to view them; the fact that they still contain a small amount of redacted material does not make them secret. I would be very grateful if anyone who mentions these files makes that clear – particularly when referring to older articles which will obviously still describe the files as being closed/secret.
I have recently become aware of other FoIA applications relating to ME/CFS. I have not yet done enough research to evaluate how useful they might be and, in any event, the appeal processes are still ongoing. Again, more to follow when I know more myself.
Ad hoc
“What terrifies religious extremists like the Taliban are [sic] not American tanks or bombs or bullets. It’s a girl with a book”. (read story here). My thanks to Paul Christie of Western Australia via Facebook for the wonderful cartoon containing these words.
And still the process continues…
I’m still moving ahead with other ideas but it will take a long time. I realise that this is something I keep saying over and over again but it cannot be any other way for someone who lives with ME/CFS. As I said before, I promise I will update here whenever I have news AND my health is up to doing it.
My writing is far from its best at the moment but I felt it better to write something, even if it’s not up to the standard I would like, rather than nothing. I hope that, in doing this, some of you might understand a bit more about what it’s like to live with chronic illness in general and ME/CFS in particular.
As ever, thank you for reading this far. I wish you all well.
Update: Legends of the Fall and some other stuff
Here in the UK, Autumn is gradually crowning us with leaves of gold as the light begins to fade and the temperatures slide. My energy is being spread very thinly at the moment but I’m conscious of a need to update this blog as the season changes and the new academic year gets under way.
My recent and unexpected foray into publishing an account of my research on “The ‘Secret’ Files on ME/CFS” (see August 2012 archives) was extremely rewarding but left me completely drained, both physically and emotionally (this was in addition to an exceptionally bad and prolonged phase of illness from May to September). My thanks to all of you who sent messages of support and requests for advice as a result of reading my article. I tried to respond to everyone but, if I missed anyone out, then I sincerely apologise and please contact me again, if you wish.
Back to School
I’m now back at Queen Mary, University of London, School of Law auditing the LLM course (a Masters degree in Law) for the second year running. I’m studying at the Centre for Commercial Law Studies as an Associate Student, which means I get to turn up for a few lectures but don’t take any exams or write a dissertation. Much as I would love to, my health is nowhere near good enough to undertake the stress of an examining procedure. This saddens me, as I would like to able to achieve some kind of recognition for the amount of effort it takes for me just to show up and undertake a small amount of research. And I also need to avoid last years’s experience whereby I went at it too enthusiastically and made myself much more ill as result – a common dilemma for those who, like me, live with the illness ME/CFS.
The support I have received from both staff and students at QMUL has been extraordinary and deeply moving – although the same cannot be said of the campus admin system. “Computer says NO” has been the standard response to most of my enquiries regarding my enrolment, personal details and access to my academic email acount thus far!
About my ME/CFS
The nature of my illness, ME/CFS , is that it is a varying and unpredictable condition. I have it at moderate to severe levels, with occasional periods when I can do virtually nothing. I have had the illness since 1981 (although not diagnosed until 1989) and have experienced some instances of the mild form when I have been able to move my life forward more rapidly; for example, when I qualified as a UK barrister in 1987. Acute ill-health for other reasons during the last decade has seriously exacerbated my overall condition and I have been unable to work at all since 1999.
The ME spectrum of illnesses (which includes – amongst many other names – Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, Post-Viral Fatigue Syndrome etc.) is deeply controversial. Even the name provokes great argument both within the patient group itself and amongst members of the international medical and scientific communities. Anything which contains the word “fatigue” is rightly condemned by those who have direct experience of the condition. Fatigue is a normal state which is experienced by everyone but it is often a relatively minor component of the ME spectrum. I am now using the word “weakness” rather than “fatigue”, in an effort to move away from the implication that my illness just makes me feel tired all the time.
I do believe that there is a condition which can be characterised by the term “Chronic Fatigue Syndrome” and it would be similar to “burn-out”. It can therefore quite properly be treated by the current PACE protocol – but that leaves the overwhelming majority of us with no recognition of the aetiology of the ME disease process nor of the urgent need for appropriate diagnosis and effective treatment. We are – in every sense of the word – invalidated.
There are countless blogs on this illness from patients all over the world. Some are excellent; some are rather less helpful. I am not seeking to provide comprehensive coverage of everything that is available. That can easily be done by anyone with a genuine interest via the usual search engines. I do recommend the blog of the courageous and indefatigable Kati Rituximabtourist in her quest to undertake a particular experimental treatment in the US (now beginning to bear fruit).
Some quick figures: there are an estimated 250,ooo ME/CFS patients in the UK (more than twice as many patients as those with, for example, HIV/AIDS or Multiple Sclerosis). There are an estimated 1.25+ million ME/CFS patients in the US and anything between 10-20 million worldwide. The numbers vary wildly depending on the source of the information. As there is no proper diagnostic procedure, some of those patients will have been incorrectly categorised. There will be others who should be included but who are missing from the figures, either because their illness is not being properly examined or they are frightened of the stigma of this disease and therefore not seeking any medical help at all.
Pick of recent developments
The long-awaited report of Dr Ian Lipkin et al was released earlier this month and confirmed what many of us already suspected: that ME/CFS does not appear to be related to the XMRV virus . However, Dr Lipkin was careful to point out that, although this particular virus does not seem to be linked to the ME/CFS disease process, there are many other biomedical possibilities for the illness. He reiterated that he does not believe that ME/CFS is a psychosomatic disease and that the search for its cause(s) will continue. It seems that we simply aren’t looking in the right places yet.
Other excellent work continues in many countries including Australia, the USA and Sweden – although sadly Norway’s research into the chemotherapy drug Rituximab seems to have stalled through lack of funding. This follows the Norwegian Directorate of Health’s apology to its ME/CFS patient group last year. However, I am still puzzled by the fact that there isn’t a properly coordinated international effort to research this disease collaboratively; it seems to epitomise the divisive and undermining nature of the illness.
In August, the UK’s Advertising Standards Authority (ASA) upheld two out of four complaints against the Phil Parker Group regarding their claims about the efficacy of the Lightning Process in treating/curing patients with ME/CFS. A minor but significant victory for common sense, one might argue.
UK doctor, writer and journalist Max Pemberton also penned an article this week which attracted the wrath of many within the ME/CFS community. I had some contact with Max a few years ago and found him to be a conscientious journalist and a compassionate human being. Unfortunately, on this occasion there were some less-than-helpful elements within his piece on this but he explained the reason why: the ME/CFS patient group has become highly unpopular over the years, largely because of the widely-reported actions of a tiny minority of militant activists and so most reputable journalists are now reluctant to touch any story on the subject for fear of reprisals.
This is an appalling reflection on the public perception of ME/CFS patients and something I hope to address further in due course. However, is it really so surprising that a mostly invisible and disempowered group of vulnerable individuals, whose condition has been dismissed and vilified for over half a century, appear defensive and outraged at their disenfranchisement from appropriate healthcare, welfare/benefits and even, in many cases, the respect of their families and friends?
A recent decision from the European Court of Human Rights has given a very helpful judgment on harrassment of members of the disabled community . I do not think it can be specifically applied to the shameful treatment and neglect of European ME/CFS patients but it is very heartening to see the Court’s outright condemnation of Croatia’s refusal to acknowledge its duty of care towards a disabled citizen. The finding of a breach of both Article 8 (right to private and family life) and, even more significantly, Article 3 (no torture or inhuman/degrading treatment or punishment) of the European Convention on Human Rights is reassuring. The Court’s declaration that a state’s abdication of responsibility for protecting its citizens from persistent harassment can amount to “inhuman and degrading treatment” is a resounding victory for the founding humanitarian principles of the Convention.
One very interesting development has been a follow-up by President Obama on his visit to Reno, Nevada in April 2011 (see video). This has led to the President’s recent letter undertaking to increase research into ME/CFS and review funding. However, given the timing of this letter – at a crucial stage in an election year – I personally wouldn’t hold my breath on this one. Nevertheless, any recognition and consequent budget increase is to be welcomed. If I was to be really cynical, I might surmise that a member of his campaign team discovered that there is a disproportionately high number of ME/CFS patients in some swing states (of which Nevada is one) – but who am I to speculate 😉 It is also worth noting that the excellent Simmaron Institute, which specialises in treating neuroimmune diseases such as ME/CFS, is located in Nevada.
If this all sounds quite upbeat – well, actually, it isn’t. The anger amongst ME/CFS patients continues to rage – and rightly so. This illness has been clearly in evidence for probably at least 150 years (Charles Darwin and Florence Nightingale are believed by many to have suffered with it: their relatively affluent lifestyles enabled them to take to their beds and be cared for by their staff when necessary – thus maintaining the invisible nature of the illness). It has been well-documented in western countries since the 1930’s and in the UK since 1955 (the Royal Free Hospital outbreak).
So here we are, in 2012, with still no proper diagnostic procedure or appropriate treatment in place and with the psychosocial model of treatment still prevailing – this being the “it’s-all -in-your-head-get-out-and-take-some-exercise” approach to treating serious illness. As Nancy Klimas, a US doctor specialising in the care of ME/CFS and HIV/AIDS patients, has stated: “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.” Link here.
And as I do the final edit of this post, I notice a new article by the UK Telegraph blogger, Damian Thompson. It reinforces all the problems about the image of people who live with ME/CFS which I mentioned above. And – yet again – my heart sinks and I feel utterly hopeless, unheard, desperate and angry beyond belief. Like millions of others around the world. The need for a constructive media campaign is overwhelming and appallingly overdue. But such campaigns take time, money and a huge energy commitment. Most people living with this illness are unable to work so have few financial resources available and no one living with ME/CFS has the energy to instigate and manage such a campaign.
The process continues
Nevertheless, I continue to work on ideas to move us forward with achieving recognition and treatment for this illness. It is a long and painful process. As I’ve said before – we in the ME/CFS community need to find a new way of talking about our illness; we need to bring about policy and culture change at the highest level; we need to eliminate the climate of fear and desperation in which so many of us currently reside. Above all, we should stop making ad hominem attacks on specific individuals and focus on the bigger picture.
This blog will not be nearly as regular and dynamic as I would like – because the very nature of my illness precludes it. My passions and concerns for the welfare of the human race and for the health of our planet extend far beyond the scope of what is discussed here. But it’s a starting-point and, as today is my birthday, it seems like a good time to pause and reflect on matters close to my heart.
I promise to update and add relevant links as and when I am able. My thanks to all of you who have read this far. I wish you well.
The “Secret” Files on ME
[UPDATED 2016]
This is my original post in the “Secret Files” series, from August 2012. It was written before my work on this subject had been completed.
At that time, posts had begun to appear on social media which were wrongly attributing my work to someone else. It became clear that I needed to publish an account of my work up that point to set the record straight. As a result, I set up this blog and drafted the post which you can read in the document below.
You can find out the whole story (and download the two files) from my later posts from these links:
- The Secret Files Unwrapped Part 1 (DWP file)
- The Secret Files Unwrapped Part 2 (MRC file). The post below is only the beginning, drafted in some haste in order to correct the record.
The full list of posts on this topic can be found in the category The “Secret” Files.
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In the last year, I have used the English Freedom of Information Act 2000 to gain access to these so-called “secret” files at The National Archives at Kew, London, UK. These files are subject to a fairly draconian process of redaction under Section 40 and 41 of the Act and my appeals against those are still ongoing.
It turns out they’re not so secret but they do give us a further body of evidence about how and why we got to where we are at the moment with this crippling disease ie. no recognition, no proper diagnostic process and no effective treatment/cure. I doubt the redactions would tell us much more even if my appeals are successful but I will post more when I have the results.
Read the full article.
Welcome/Bienvenue/Wilkommen/Bienvenido/Benvenuto/Powitanie/Karsilama/Selamat-datang/أهلا بك/добро пожаловать/欢迎/स्वागत हे…….
Thank you for visiting my blog. I have activated it on 21 August 2012 in London where I currently live.
For the time being, there will not be much on here as I’m just beginning the process of setting up. However, I look forward to meeting many visitors here soon.
It’s time for change.
valerieeliotsmith 