August 3, 2010


ME + me :  Real scientific research into ME in GB


    "I know," wrote Zamiatin, "that I have the very uncomfortable habit of saying not what is advantageous at a given moment but whatever I believe to be the truth. I never concealed what I think of literary servility, toadyism, and coat changing. "

 -- from: Introduction to Zamyatin's We

I keep being unwell and as I also have the same unfortunate habits as Yevgeny Zamyatin, of whom more in the above link, that is to a pdf (11 MB) of his best known book, a classic description of the totalitarian state and mindset, of which more in yesterday's Nederlog, I do maintain the quotation of his and my habits, but I have today only a quotation of a British newspaper article with a brief comment.

The quotation is of an article by Sarah Hall in something a bit quaintly called - for this non-Brit - "EDP24 Britain's National Newspaper of the year" (*). I quote all, because I like it and because it supports my bitterly ironical title, but I indented her quotations of others, and supplied some bolding and a link:

Norwich centre for ME sufferers planned

Hope was last night offered to thousands of people with ME after it emerged crucial talks were under way to establish a world class research and treatment centre in Norwich.

Campaigners have spent years trying to improve the lives of people with the debilitating condition, for which there is currently no cure and affects 10,000 people in the eastern region alone.

Now talks between Dr Ian Gibson, the national Invest in ME charity, the UEA and NHS Norfolk have taken place with the view of setting up a centre to properly research, diagnose and treat the illness. If it goes ahead, it will be the first centre of excellence in the country and firmly put Norwich on the map of advancing medicine and healthcare.

ME (myalgic encephalomyelitis), also known as chronic fatigue syndrome, is a contentious illness because for years clinicians and other medical professionals refused to recognise it and it was often dismissed as “yuppie flu”, despite causing years of complex problems such as overwhelming tiredness, swollen glands, painful muscles and joints, and severe sleep difficulties.

However, years of campaigning and hard hitting inquiries in the condition - one of which was held by former Norwich North MP Dr Ian Gibson - has raised further awareness and understanding of the condition.

Dr Gibson said:

“This centre could totally change the lives of people with ME. At the moment there is no proper diagnosis for ME and treatment is patchy. We would do research here and, as this develops, we can treat patients from all over the country and the rest of Europe.

“This is a great opportunity to treat chronically ill patients who have maybe not had proper treatment in the past.

“There are 250,000 people [nationally] with ME and this could finally make a difference to all of them.”

There are preliminary discussions to establish at the research centre at the UEA - because the equipment and research facilities are already there - with services commissioned by NHS Norfolk.

The service would offer early diagnosis, examination and treatment of the illness, with diagnosis commissioned by NHS Norfolk and referals made through GPs.

In Norfolk and Suffolk there are an estimated 4,000 people with ME from the age of six and above.

Richard Simpson is the founder of Invest in ME which campaigns for research and funding to establish causes and an understanding of the illness. The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

He said the research being proposed would be the

“most advanced possible”.

“ME is not often diagnosed properly because doctors often eliminate other illnesses and then conclude it could be ME without proper tests. The patients do not get treated properly,” he said. “Early diagnosis is so important and this centre would help establish that happens.

“It will start smaller and just get bigger. At the moment nobody is getting better. It is a hideous illness and people suffer a lot and some die from it.

“There is no other illness which affects so many people yet is so unrecognised and so underfunded. It is not right that people have to travel abroad to get the right treatment. It would be so fantastic to carry out all these functions in Norwich and the next few months are crucial in terms of pressing ahead with this. We won't give up the fight until we are treating ME properly.”

Mr Simpson, from Norwich, and his wife Pia set up the charity after both their daughters developed ME. Annika Simpson, 24, has had it for 11 years and Jennifer, 20, for seven years.

They are basing the new centre on an American clinic called Whittmore Peterson, an institute for neuro-immune disease in Nevada which helps thousands of people with ME through research, scientific developments and subsequent treatment.

The charity already has support from other charitable organisations and clinicians.

Discussions will be going on over the next few months and once a decision has been made, funding will begin to the tune of £150,000 a year.

A spokeswoman from the UEA said:

“Preliminary discussions have taken place, but no decisions have been made at this stage.

“Whenever any new centre is proposed at the University, there has to be very detailed exploration of logistics and implications for the department concerned before any commitment is made.”

Dr Gibson and Mr Simpson were hoping the Norfolk and Norwich University Hospital would be become involved by setting up clinics, but bosses have said they have no plans to see patients there so they are looking at suitable services across the county.

In 2006, a parliamentary group headed by Dr Gibson spent a year looking into ME, taking evidence from sufferers, carers and experts, and he argued for massive investment, which has yet to materialise.

The reason why I quote and link is not that I know dr. Ian Gibson, for that I do not (which illustrates nothing about dr. Gibson, other than my relative ignorance), but because of this:

Richard Simpson is the founder of Invest in ME which campaigns for research and funding to establish causes and an understanding of the illness. The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

Again I knew nothing about Mr. Simpson other than is in the article, but I do know about Invest in ME, which has a fine website and seems to be run by sensible people, who do sensible things, like organizing yearly conferences on ME and producing videos of these, while they also supply a very helpful ME Information Centre.

What is also true is that £150,000 is very much money for me, but is not much money for research - but then this seems to be meant to be real bio-medical research, and that would be a great advance in Great Britain, of which this then constitutes the first step.

So I do think this is good news, mostly because of what I know of Invest in ME, which has an interesting and useful site, that is also well designed.

Also, indeed the parallel with the Whittmore Peterson Institute is striking - with this bitter aside, that both the British state and parliamentarians, and the American state, senators and representatives, have each and all failed, and failed in major ways and for several decades, to support proper bio-medical research into ME/CFS, and indeed had it blocked actively for over twenty years by the leading officials in institutions they supported, financed or ruled, and have likewise failed to support and failed to protect the human and civil rights of very many persons with ME, who have uniformly received neither the support nor the help people with other neurological diseases as listed by the World Health Organization do get, and that persons with ME are and should be legally entitled to receive as well.

Otherwise, I am today not fit for much: It's the old dysfunctional belief system playing up, y'know.

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

(*) That's what it says, at least, and it gladdens my logical heart. There also is a fine book called "What's the name of this book?", by the mathematician and logician Raymond Smullyan, full of excellent, funny and interesting logical puzzles.

Maarten Maartensz

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