Good things: film, dance, books

Last week, I got the DVD of  the documentary film Voices in the Shadows, which came out in 2011 -  of course, I've known about the film for ages, but have never felt in the frame of mind to watch it, until now. The portrayal of severe ME - the most severe imaginable - is harrowing and although I was not this severe, it still taps into my very bad times, and chills me to be reminded of them. This film is beautiful in its simplicity: the multi-systemic, devastating illness ME  has been hijacked by psychiatry, the criteria diluted, the research polluted. Patients are being made worse by brutal regimes of graded exercise. It is well worth watching. The narratives will shock you, even when you think you are jaded and can no longer be shocked by the neglect - and abuse - of the medical profession towards patients with ME. Dr Nigel Speight and  Professors Leonard Jason and Malcolm Hooper  articulate the plight of severe ME sufferers with such grace and compassion, it's hard not to have tears. My anger at the gang of medics who are guilty is reignited. And my heart breaks - again - for those who suffer from severe, unremitting illness. Dr Speight talks of a 'sort of new Stalinism coming into British medicine'.

As I got ill in autumn 1982, before the Wessely school nonsense/conflation/denial -  I had Dr Behan and Dr Ramsay on my side - I was myself never forced by powerful medics to pretend that I was not actually physically ill. Although, it was not a walk in the park getting diagnosed, it took 18 months. And like most PWME, there were people in my life I simply blocked out because of their  lack of understanding. You have to, in order to survive. And I will never forgive those people. I often say that without strong family support this illness could undo you. I also think that it is actually impossible to truly ever understand ME unless you have it. Even now, borderline moderate/severe - housebound much of the time because of post-exertional malaise (PEM) - I can look fine and seem fine for a window, but behind the scenes I feel as I've been hit all over with a mallet and my brain is on fire. I can't form a sentence, I drop words. I  bump into things.

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And this is gorgeous,  I love the energy in the performance -  actor Sarah Gordy  dancing in 'Violence of Discovery, Calm of  Acceptance'.

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Nothing makes me happier than secondhand book stalls. Such jewels and bargains to be found last week at a Christian Aid book fair in George Street, literary fiction and non-fiction for £1 - boxes and boxes of  books, including Penguins and Pelicans. It was sunny and there were trestle tables outside, it was like Paris. It reminded me of how much I love paper books. And I wondered what secondhand book fairs/shops will be like in fifty years. Will they even exist?

Notes by Dr William Weir from 8th Invest in ME Conference, May 2013

From Invest in ME's Facebook page:

Notes made by Dr William Weir at the 8th Invest in ME Conference, May 2013.

Permission to repost.

INVEST IN ME

Synopsis of proceedings of 8th International Conference held on 31st May 2013. Dr William Weir FRCP (Lond) FRCP (Edin)

The main theme of this conference focused on the three burning questions which all ME sufferers want answered, namely what causes ME, what is being done to discover this cause and what treatments might be effective? What was very encouraging was the impressive cast of speakers from around the world whose scientific credentials could not be challenged. Happily, none of them were psychiatrists, as gradually the psychiatric, biopsychosocial theory of ME causation is being consigned to the dustbin of history. There is now far too much high quality scientific evidence indicating that ME is due to immunological dysfunction and many of the speakers stated this principle very forcefully.

There were four main categories of speaker. Firstly there were those who talked about the organization of studies, which included the collection and computerisation of data (such as case histories) and biological material (such as blood and other body fluid samples). Clearly, in the USA at least, work of this nature is now getting off the ground and a large effort is being made to establish a “biobank” of biological materials from patients which will be made available to researchers. Here in the UK a biobank has already been set up, based at the London School of Hygiene and Tropical Medicine to where blood samples are being sent for cold storage.

Secondly there were the immunologists who described the immunological abnormalities seen in ME patients. One of the frustrations with ME is that, although there are always across-the-board abnormalities, those seen are never as consistent as they are, for example in AIDS where one particular type of immunologically active cell is consistently reduced. However one of the speakers came out with the opinion that: “if any doctor now thinks that these abnormalities are due to psychological disorder and that exercise is the cure, he/she should be deregistered” (He was from Australia).

One phenomenon which is now well recognised is the “cytokine flare” which follows physical (and mental) exercise. Cytokines are substances produced by the immune system as part of a normal immune response to the presence of an invading bug, be it a virus or bacterium (or other, such as a malaria parasite). Interferon is the one most people have heard of. They make you feel ill as part of the body’s normal defence against infection. In ME however they appear to be produced inappropriately, and go on being produced in the apparent absence of a recognisable infection. Furthermore there is an abnormal increase - “flare” - after exercise which now explains the problem of post exertional malaise. Here, at last, is direct evidence that Graded Exercise Therapy (GET) is very likely to be harmful.

Thirdly the issue of a possible virus infection was addressed. This would provide a logical explanation for the ongoing immunological activity – finally identifying the metaphorical fire from which all the immunological smoke was coming. The XMRV story was reviewed and provided real insights into the complexities of identifying a “new” virus. The term “new” meaning hitherto undiscovered, as it is fully appreciated that there are probably very many undiscovered viruses out there in the biological ecosystem, often being carried silently (ie without illness) by a large range of animals, including humans. The disease -causing potential of these viruses is unknown and may have very long incubation periods with infection preceding the development of disease by many years. For example It has been suggested that Parkinson’s disease is due to such a virus, and the same may be true of ME.

As many will know, XMRV was finally recognised as a contaminant of the cultures in which attempts were being made to grow a new virus from samples taken from ME patients. The initial excitement over the discovery of XMRV was dampened when this was realized, but has not deterred the search for other viruses. To apply historical perspective, when influenza was first researched, a number of bacteria and viruses were initially but incorrectly proposed as the cause before the real villain was identified. Some very sophisticated techniques are now being used in the search for the real ME villain, one candidate being a form of retrovirus known as a “human endogenous retrovirus” (HERV). These are viruses which are already present in human genes, and usually inactive (ie not replicating). Nonetheless they probably can be turned on again and they have been postulated as causes of a wide range of diseases, including cancer and autoimmune disease. Thus ME may well be due to a HERV.

Finally there was a presentation of the Norwegian study of rituximab therapy which shows promise in the treatment of ME. Twenty of twenty eight patients improved significantly although there was a lag period of two to three months before improvement occurred. Rituximab specifically targets the CD20 lymphocytes, taking them out of circulation but well before symptomatic improvement – suggesting that it is antibodies produced by the CD20 cells which cause the symptoms, but which require the 2-3 month period to clear from the body. This study on its own supports the immunological hypothesis of causation, further diminishing the psychiatric attribution of an “abnormal illness belief”.

Rituximab does however have its drawbacks. It is potentially very toxic, also very expensive and no UK doctor would be able to prescribe it for ME at present. Further studies are in progress.

 * And I'm delighted to see that Professor Malcolm Hooper was given an award by Norwegian ME Association at the event.

We could send letters

The title of this post is from one of my favourite Aztec Camera songs and it reminds me very much of when I first got ill, when ME punched into my life, and everything was so frightening and terrible. And on the subject of letters, I am at this moment bowled over by the wonderful Countess of Mar, a longtime advocate for people with my illness (she has been ill herself from organophosphate poisoning), who has just written a dazzling open letter to Simon Wessely. 

After the article in the Independent recently, in which the Countess of Mar and others suggested Simon did not deserve the Maddox medal, there was an  utterly predictable and nonsensical response from Esther Crawley and her friends, mainly psychiatrists and psychologists. Responses to her letter are at bottom of the Indy letters page, you need to scroll down.

I'd decided not to blog any of this because I'm so very bored and exhausted by the Wessely school - as I've said elsewhere Simon gets himself more coverage than the American presidential elections. 

But the letter  from the Countess of Mar  just had to be blogged.

And Professor Hooper has also responded to Esther and co.

And the Canadian National ME/FM Network has written an open letter in response to Simon's recent attack on the Canadian Guidelines (which Scotland favours).

Maybe, maybe, maybe, just maybe these 'bio-psycho-socialites' will now leave us the hell alone.

Just maybe.

*Simon's response to the Countess of Mar, and her reply to his reply. 

** The entire Mar-Wessely thread is now here.

Bravo!

Heartening indeed to see this in yesterday's Independent.

Dr William Weir,  Professor Malcolm Hooper and Countess of Mar, are to be applauded for  publicly challenging the decision to give Simon a medal. A chink of light in the grotesque sitcom of cronyism, that has seen the opposite of science  - conflation and obfuscation - dominate the treatment and management of my illness in the UK.

And, in today's Telegraph we have Dr Charles Shepherd, medical advisor to the ME Assocation - both of us, at different times, had muscle biopsies under Prof Behan - speaking of the need for biomedical research.

Since people with ME have virtually no right of reply when the Wessely PR machine spins out its spin - and it is spin - it is glorious to see Dr Shepherd's words: 'The NICE guidelines on ME are not fit for purpose'.

This is the guideline (in England*) that has been so heavily influenced by the Wessely school, the guideline that is oft-quoted by journalists with an almost religious awe, journalists who have no curiosity about truth. The guideline that advocates CBT and GET, the guideline that harms people with this neuroimmune illness.

*The Guideline in Scotland is not quite as bad.

Magic: How to Make an Illness Disappear!

Am linking to  Professor Malcolm Hooper's complaint to the MRC: Magical Medicine: How to Make a Disease Disappear. And thanks to Nicky for pointing out the report to me in the first place. Wonder if the boys at BMJ will be reading Professor Hooper's words...