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.