Walking like an Egyptian in 2014

It’s exactly a year since I last wrote anything for this blog. I didn’t mean to leave it this long but I’ve just been too ill to write. I have had plenty of ideas and thoughts which I wanted to write about but it just hasn’t been possible. I don’t yet know whether or not I will be able to start writing more regularly again; my health has been very bad during the last year but I’m hoping that there is a slight improvement now.

For any new readers, I have lived with the complex neuroimmune disease Myalgic Encephalomyelitis (ME) since 1981, in widely-varying degrees of severity. ME is also known – very unhelpfully – as chronic fatigue syndrome (CFS). At this point, I usually provide a link to the Wikipedia entry for those who want to know more about the illness but I’m not going to do that this time. If you put “Myalgic Encephalomyelitis” into Wikipedia you go automatically to “chronic fatigue syndrome”. There is no stand-alone entry for ME; this is symptomatic of the nightmare of this illness. Even the name is disputed, let alone its classification, diagnostic criteria and ultimately its very existence, despite an estimated 20 million patients worldwide. However, for anyone who is looking for a more accurate definition, the International Consensus Criteria give a realistic overview of the symptoms of this disease (and, crucially,  does NOT include simple “fatigue” – one of the greatest misnomers of all time). Most commentators habitually confuse fatigue with a state of having systemically low energy. Every human being experiences the former; far fewer people experience the latter, usually as an inevitable consequence of chronic illness.

Blog update

The New Year brought a standard update from WordPress about my blog statistics, cheerfully trumpeting the fact that I’ve had a very modest 1100 views in the last year! Actually, for a blog that’s been dormant for 12 months, I’m very heartened by that. The total number of views topped 4000 (from over 50 different countries) just before the Christmas holiday period. By most standards, that’s pretty minimal but I’m actually delighted with that figure. The blog contained only 10 posts over a 6-month period so I reckon 4000+ views is pretty good going.

The original purpose of this blog was to disseminate information which I had gathered about the so-called “Secret” files on ME (see earlier posts in the sidebar from August and November 2012). That purpose remains and I will keep the blog live as a community resource, even if I can’t update it any further. I plan to do a review of the situation regarding the files but that will be (hopefully) in another post. I need to do some more research and updating to complete that task and I don’t have the strength to do it at the moment.

Despite being more disabled by the illness in the last year, I still monitor/research developments in ME and work on building networks with other patients. I receive occasional requests for assistance and I always respond and help wherever I can and will continue to do so. I spend much of my time working on relevant issues but because of my cognitive impairment (caused by the combination of long-term ME, too many anaesthetics and the inevitable ageing process) my progress is painfully slow and very limited in its scope. However, despite keeping rather quiet, I am still here and as committed as ever to the collective cause of bringing about change for the global ME community.

Brief review

A short round-up of current issues which I think merit highlighting; I would like it to be much more extensive but again, my resources will not permit that.

There is encouraging work taking place all over the world by both highly-respected medical institutions and by deeply-committed ME patients. Vast numbers of blogs and websites are constantly updating on developments in ME. I use many different resources (for example here, a post on cognitive problems which I find are the most distressing symptom of the illness). Each blog has its own agenda and there always will be people who don’t like what is said (as I know only too well); it’s simply a question of finding the resources which work best for you.

The community of patient-advocates in the US is, of necessity, particularly engaged and active at the moment. On the positive side, Jen Brea, who has severe ME, has just been interviewed by American Al-Jazeera TV ( Part 1  and  Part 2 )  about her project Canary in a Coal Mine, a documentary film which she is making about the illness. On the negative side, the relevant US government agencies remain intent on treating the ME/CFS community with breathtaking arrogance and opacity. The story is far too complex for me to set out here but I do recommend Jennie Spotila’s blog which gives regular updates on its progress at Occupy M.E.

Continuing the good and the bad theme: the opening of the National Centre for Neuroimmunology and Emerging Diseases at Griffith University, Queensland, Australia, and its developing focus on ME/CFS, is a very positive step forward for the international community. Conversely, the detention of Danish citizen and ME patient Karina Hansen against her wishes and those of her parents continues to give cause for grave concern. Karina has been locked in a psychiatric facility for nearly a year. The lack of information is extraordinary; there may be legitimate legal reasons for this but I am baffled and appalled in equal measure by these events. I gather there are lawyers working on her behalf but what I cannot understand is how domestic and/or European law has not already provided a resolution to this shocking situation. However, the lack of information means that it is impossible to form a considered opinion on these events.

Fortunately for us, research continues on immunomodulatory and antiretroviral drugs (eg. Rituximab and Valganciclovir), gene expression, 2-day exercise testing as a diagnostic tool and many other areas – despite political apathy/obstruction and a significant lack of state funding/support. Again, many information sources are available.

Finally – the very bad: the controversy surrounding the completion in 2010 of the 5-year PACE Trial in the UK continues unabated. This trial was supposedly a demonstration that ME patients could benefit from a regime of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). In other words, it further legitimized the most dangerous myths pertaining to this illness: that patients were not really ill, they only thought they were and therefore they could a) be brainwashed into thinking themselves well and b) remedy their deconditioning from inactivity with staged physical activity. Wrong on both counts. The Principal Investigators of this publicly-funded (£5m/US$8m) trial have repeatedly refused to release the full trial data; Queen Mary University of London is the relevant public authority which holds the information (Disclosure: I am a Visiting Scholar at QMUL). Those who continue to request this information under the Freedom of Information Act are frequently declared “vexatious” by the Information Rights Tribunal.

There are several important facts you need to know about the PACE Trial. Here are four of them:

1. There is no internationally-agreed set of criteria for diagnosing ME (or CFS) so it’s quite possible that the trial included patients with other conditions (including psychiatric) or who didn’t have ME/CFS at all. There are multiple sets of criteria used across the world; the Oxford criteria were used for this trial in which fatigue can be a sole qualifying symptom.
2. The most severely disabled patients were unable to take part – because they were too ill to even get to the hospitals, let alone take part in exercise
3. The outcome measures were subjective – ie. mostly through self-reporting, a notoriously unreliable method of collecting data
4. The outcome measures were “adjusted” during the course of the trial. It was possible to enter the trial with a score of 65 on the assessment scale (0-100, with 100 being someone in excellent health) and to finish with the lower score of 60 on the same scale but be counted as “recovered”. So a patient could enter with a score of 65, deteriorate to a level of 60 but still be counted as recovered within the trial parameters. (Incidentally, a score of 60 is similar to the level which a patient with congestive heart failure would be likely to achieve). Recovery? Seriously?

The sources for this information are multiple and I cannot list them all here. However, if anyone wants further information then I recommend this paper by patient-advocate Tom Kindlon (and many thanks to Tom for his assistance with the above) http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

Human Rights Question

I am often asked whether we should consider using European human rights law to challenge the status quo. Unfortunately, the short answer is that I don’t think it will help us for two reasons. First of all, it’s a very lengthy and time/energy-consuming process (ballpark – think 10 years and minimum £100,000/US$160,000). Secondly, and probably even more significantly, given the state of the current  UK NICE guidelines, the argument which can be encapsulated as “The British healthcare system provides appropriate treatment according to the Guidelines, given the official current state of knowledge” would be likely to succeed. That’s not to say that it’s not worth a try (and it may be different in other countries, although I suspect the outcome would be similar) but, with those odds, it’s not really an option for most of us. There is also the problem of finding a competent and willing specialist lawyer. As I have already discovered, many reputable, high-profile lawyers (as with journalists and celebrities) don’t want to go anywhere near the controversy of ME issues. (That last statement opens up a whole other can of worms but I’m not going any further with that at this stage.)

Anatomy of a Successful Campaign

I’ve been putting off writing this section – partly because I’ve overstretched myself in writing this much (it’s already much longer than I intended) but also because it’s the most important issue for everyone who lives with this illness. If I do write further about this in due course, then I want to do it justice. ME has been in evidence for at least 150 years. It began to be recorded in several countries from the 1930’s onwards. In the UK, it has been properly-documented for over 60 years. That means that in the UK, for example, we are now seeing the emergence of the third generation of patients who are facing life with an illness which is still largely marginalised, ridiculed and untreatable. The earliest patients are mostly dead now, having had their lives invalidated by the prevailing culture and leaving only the heartbreaking legacy of their unheard voices.

Like most patients, I spend a disproportionate amount of time and energy trying to understand how this can possibly have happened and what might be the tool with which to dismantle the flawed medical/political/social constructs. It is a subject which demands greater research and consideration. I am right out of resources now but I hope to return to it at a later date. In the meantime, more patients will have died and Karina Hansen may still be incarcerated in her Danish prison. [update: Karina was finally allowed home in October 2016]

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Walking like an Egyptian in 2014

Ah yes – why this title? Well, the honest answer is that I wanted something catchy and this popped into my head from nowhere and wouldn’t go away. However, it occurred to me that it is, in fact, something I occasionally do in the middle of the night. To explain – like many people living with this disease, I sleep badly. I usually wake several times during the night, often in considerable pain and/or discomfort. Of necessity, I get up and walk around for a bit to ease the pain. My flat is constructed around a corridor with rooms off each side and I’m often to be found pacing up and down said corridor during the night. It can get a bit boring so I sometimes vary the steps a bit including – yes, walking like an Egyptian. So – next time you are wandering around with insomnia during the night, imagine me doing the same and perhaps we can start a trend. At least it might raise a collective smile in the loneliness of the wee small hours. (And in no way do I mean to minimise the current tragedy of democracy unravelling in the state of Egypt – but that’s a debate outside the scope of this blog.)

Thank you to everyone who has read this far. I send you my best wishes and hope to be back a bit sooner next time.

http://www.youtube.com/watch?v=Cv6tuzHUuuk&list=FLzbW98ow_XKOd5vlvPqULzA&index=3