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Update: Legends of the Fall and some other stuff

September 29, 2012

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.

7 Comments leave one →
  1. Jono permalink
    September 30, 2012 02:00

    Beilliantly written!
    Thank you for sending it to me & thank you for writing it. I understand how much it will have taken out of you to do it.
    And happy birthday!
    Jono x


  2. September 30, 2012 09:20

    Thank you for an excellent and informative post.

    Interesting to see the study in Sweden will be looking into a number of co infections often linked to ME/CFS as indeed the Stanford study with Dr Montoya is doing ( I haven’t got a link to the study details).

    I am one of the lucky subset of patients that was found to have Lyme disease and on long term antibiotics have made a good recovery. Sadly in the UK patients are rarely even tested for this although the NICE guidelines do say that it should be excluded before giving a diagnosis of ME/CFS. Actually the current tests done by the NHS according to the Test kit makers says a negative test does not rule out Lyme Disease. Some research says the tests can miss 50% of cases so effectively it should be a clinical diagnosis and as NHS doctors are not experienced with this disease it is difficult to find a doctor in UK who is. Some people have improved enormously from treatment through Breakspear clinic although I have no personal experience of their clinic and it can be expensive as are all private clinics for whatever the treatment.

    Back to ME/CFS one bit of good news is that Sonia Poulton wrote an excellent article
    On her Facebook page Sonia gives permission for this article to be published in other newspapers and more importantly she is currently looking into other ways she can write in support of patients.

    It is well past time that the media voiced what was really going on.

    Perhaps eventually all patients in UK will be tested for what underlying pathogens are driving their illness and like an onion perhaps appropriate treatment for each problem be it fungal, viral, bacterial and/or immune suppression , will peel back all the layers and allow improved health.


  3. clare457 permalink
    September 30, 2012 13:44

    This is a brilliantly informative post, thank you Valerie!! Happy birthday! 🙂


  4. September 30, 2012 15:12

    I have just been listening again to what Judy Mikovits had to say about if this was HIV it would be 1983 – although they may not have found XMRV in the LIpkin study there clearly is so much more that can be done to address the co infections as Judy points out
    Judy Mikovits If This were HIV it would be 1983

    Dr. Judy Mikovits summarizes at the NIH Workshop 4/8/11

    I would love to say something.

    I would like to say that what I’ve seen here this week says that clearly XMRV at best what we originally set out to do 5 years ago was a systems biology approach. We use these genomic technologies with Mike Dean and Mary Carrington. We use the micro assay from the NCI to screen all the pathogens and what we saw was what we heard from Mary Scheitzer that a lot of active pathogens and things like shingles and things like enteroviruses things like EBV, CNV, HHV-6 they are all totally on in that micro- assay in NCI’s infinite wisdom it didn’t put XMRV on it but that’s how we ended up going back but we didn’t look with a hypothosis for retroviruses. We took the systems biological approach collected samples from well defined patients who had the infections characteristics that Tony Komaroff talked about and that were in the Lo study and Dan Peterson had done, all these patients had data on them for decades we took samples over 3 years so it wasn’t that we found the virus in every sample indicate like the Marquee study where it quickly went into tissue like the mouse study that came this week that said the antibodies responses were weak and transient.

    We don’t know everything about this virus but HIV does not cause AIDS. The CDC definition is HIV and one of 25 co pathogens the Lyme and the EBV, the Enteroviruses, Martin Learners patients who don’t get better with ? This is a reasonable hypothesis because we see the same thing. We’ve developed a cytokine signature that is distinct from Nancy’s cytokine signature and Nadelson’s so this is a marker to follow on clinical trial improvement but there’s no doubt that these people who are infected with HTLVI- If you’re seropositive then you can get some kind of treatment. I am not saying anti- retrovirals. I’m saying immune modulators. So the patients that are found to be infected now and there are thousands of them need something now not three years time when Lipkin decides there’s an association.

    Whatever their disease is they are infected and sick and I know John has patients that are —Chia has patients that are co-infected so they don’t treat the same way some can get together with the physicians who have co infected patients even Lyme Doctors who are working with us across the country and start doing something now take it out of CFS it’s not about CFS. It’s about a retrovirus we don’t understand very well.

    As Frank said at a meeting a month ago if this were HIV it would be 1983.

    The only place in the UK that I have heard tests patients with ME/CFS for any of these co infections is the Breakspear private clinic. And what do they get for their efforts ridicule and attack by the health departments who fail to do this investigative work themselves.


  5. September 30, 2012 18:22

    Hi Valerie
    Thank you for all the great work and efforts.
    While the attacks on patients continue here in the UK, I feel we are getting closer to the tipping point and I remain hopeful that the wheel will turn in the patients’ favour, eventually.
    The more I read ignorant and outrageous articles from social commentators and co, the more I think the proponents of the psychosocial model are getting desperate. They are losing ground, slowly, and they know it.
    Happy birthday and take good care of yourself.


  6. Rachael Allen permalink
    October 1, 2012 07:36

    Wonderfully written blog, Valerie. You’re an inspiration with all that you accomplish. Thank you for being the compassionate person you are, helping to get the proper information out there, and persisting in your journey to something better. I love you, my friend.


  7. October 3, 2012 14:02

    Excellent article, thank you.


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