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Walking like an Egyptian in 2014

January 7, 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/CFS (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/CFS 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/CFS, 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/CFS 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/CFS patients. Vast numbers of blogs and websites are constantly updating on developments in ME/CFS. 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/CFS, 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 occupycfs.com.

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/CFS 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/CFS 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/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,ooo). 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/CFS 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/CFS 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 the last 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.

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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

 

19 Comments leave one →
  1. January 7, 2014 10:52

    Reblogged this on Short Blogs for the Distracted……….

    Like

  2. January 7, 2014 10:53

    Great blog …. Worth the wait 🙂

    Like

  3. Erik Johnson permalink
    January 7, 2014 17:07

    Lots of people talk about the confusing name “Chronic Fatigue Syndrome” and speculate how this misnomer got started.
    Usually they think it was an accident, or “They simply didn’t know”

    Which, of course, is ridiculous.
    As an Incline Village survivor and prototype for the syndrome, I saw how it happened.

    And it’s not good, for their choice to denigrate the illness was entirely deliberate.

    I posted a bit of the real story on “Canary in a Coal Mine”s FB page.

    Like

  4. SteveH permalink
    January 8, 2014 01:16

    Good blog Valerie; and totally ad free thanks to AdBlockPlus, so no need for worries there.

    Vis a vis, looking for a legal opening to challenge the diagnostic status quo; I think that the route lies not in challenges to NICE (Which covers itself in its own guidelines, by stating that they are not intended to replace the expertise of the physician.), but in challenges to the psychiatrists’ power itself via the human rights violation of people like Karina Hansen, following the remarks from the UN Raconteur on torture, that much psychiatric ‘treatment’, he would consider fulfilled that definition. I also think that there should be a campaign for specific human rights for sick–as opposed to disabled–people. As far as I can see, this group has been left out in the cold, while many other groups have been given specific protection.

    Like

    • January 8, 2014 11:02

      Thanks for your comment, Steve.

      The human rights area is vast and complex (see my reblog from UK Human Rights Blog in the September 2012 archive in the sidebar for a short outline). It might be possible for a lawyer with right level of expertise and commitment to construct a creative argument which could gain some traction but I think its ultimate chances of success would be slim. The complexity of the area means that even finding the correct starting-point (cause of action) is problematic – although I would have thought that Karina Hansen’s situation could be a candidate (and might become so; there is insufficient information to form a view at present).

      The strict definition of “torture” by the European Court is very narrow and limited in its scope. I think it highly unlikely that treatment of ME/CFS patients would be considered to fall within it, for the reason I give in the above post.

      None of this is to say that I don’t agree with your points. I do. However, my purpose is to try to ensure that vulnerable people don’t waste precious energy and financial resources pursuing causes which have little chance of success. We need to identify what might work and focus on that.

      Thanks and best wishes to you.

      Like

  5. Claire permalink
    January 8, 2014 08:01

    I have just found your Blog, Valerie and will certainly be staying tuned. Hope you will be feeling a little better soon.

    Like

  6. January 8, 2014 08:06

    HIV-Negative AIDS: Is it CFS, GWS, or AIDS?

    Allied NATO Government is hiding millions of infectious NON HIV AIDS cases (like mine) under the “Chronic Fatigue Syndrome (CFS)” ICD-code.

    – Dr. Lorraine Day was on Joyce Riley’s military show THE POWER HOUR (9/12): “…HIV-Negative AIDS cases falsely reported and treated as CFS cases may be one of the biggest cover-ups we have seen.”

    – In 1992 “…Newsweek made an even more shocking announcement: …CFS patients who had the same immune system deficiencies as the NON-HIV AIDS cases…”

    – Dr. Judy Mikovits stated on In Short Order (11/12) about CFS & Myalgic Encephalopathy (ME): “…consider this as NON HIV AIDS.”

    – Neenyah Ostrom’s book “America’s Biggest Cover-up: 50 More Things…CFS & Its Link To AIDS” cites: “Some CFS Patients May Be Non-HIV AIDS Cases.”

    – NON HIV AIDS has been censored from mainstream media since 1992 (i.e., suspiciously, the same year that the *very mysterious* Gulf War Syndrome (GWS) presented).

    Will GWS, CFS or AIDS ever make any progress unless we acknowledge these horrific facts?

    My case goes up through the NIH, CDC, White House, WHO, to the UN. I testified federally in Washington-DC, and am published 21 times on 4 continents.

    E.g., http://www.ukprogressive.co.uk/the-aids-like-disease-seldom-mentioned/article20891.html

    I hope that you will spread-the-news too.

    My life with NON HIV AIDS (including my federal testimony):

    http://www.cfsstraighttalk.blogspot.com

    Like

  7. rebecca permalink
    January 8, 2014 18:15

    Thank you for your blog. I am really trying to be more active in the fight for ME/CFS research and rights, but I, also, am just too pooped! So your contribution and information is greatly appreciated!

    Like

    • January 8, 2014 18:20

      Thank you, Rebecca. Best wishes to you and good luck with your own efforts. Most people have no idea how hard it is for us. Please take good care of yourself too.

      Like

  8. January 8, 2014 19:36

    Hi Valerie. Ive just found your blog and its fantastic. Thanks so much for all your efforts. This is one hell of a battle we’re in. Ive had ME since 1983 and the suffering and lack of support is so unbelievable that those who are lucky enough not to have family members or friends with ME just can’t believe how we are treated. Those in the medical profession that continue to blame the patient for this terrible illness must be held to account. We should demand that they “STOP BLAMING THE PATIENT”. I wish there was a way that we could all make that demand in a cohesive unified voice. Every single person who has ME should make that demand of any clinician. Its not our fault that they don’t know how to cure us or diagnose us. Its their fault because their lack of relevant biomedical research on this subject has left us with no diagnostics within the NHS so the obfuscation continues and the psychiatric lobby laugh all the way to the bank.. Sorry! I went on a bit. But I know how hard it must be to keep your blog going with ME, so just never give up cos its people like you that will win this battle we have to force them to see the truth.

    Like

    • January 9, 2014 11:19

      Thanks for your comments, Matthew. I completely agree with you – especially about the issue of “Let’s blame the patient”. It’s become entrenched in the narrative surrounding ME/CFS and is one of our biggest challenges.

      Best wishes to you and take good care of yourself.

      Like

  9. January 20, 2014 17:21

    I’ve finally been able to read this Valerie, I’m sorry it has taken me so long… as ever I am amazed at your knowledge and clarity, frustrated and sad at the loss of you in the world and angry at the lack of support for you, touched by your gentleness and kindness, which just shines through you and your writing, and so glad and grateful to have your finely tuned, beautiful presence in my life… I’m glad you have been able to write again and truly hope you are well enough to write another blog sooner next time… I love you very much ❤ x x x

    Like

    • January 20, 2014 17:53

      Anna – thank you for your kind words and all your support. It means a great deal. I hope to write more soon but am still recovering from writing the last post at the moment so it won’t be just yet. Sending much love to you.

      Like

  10. January 27, 2014 18:04

    Thank you so much Valerie for all your efforts – always so clear and sensible. Hope you can have some decent rest now. Best wishes Moosie

    Like

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