Posts Tagged ‘ME’

Handbook of Disability History in Latest Oxbow Book Catalogue

March 31, 2019

I got the latest issue of Oxbow Book News, for Spring 2019, through the post the other day. Oxbow are specialist booksellers and publishers for archaeology and history. The Book News is really a catalogue of what they have in stock. And in the latest issue was The Oxford Handbook of Disability History, edited by Michael Rembis, Catherine J. Kudlick and Kim Nielsen (Oxford: OUP 2018). The blurb for it in the catalogue runs

Disability history exists outside of the institutions, healers, and treatments it often brings to mind. It is a history where the disabled live not just as patients or cure-seekers, but rather as people living differently in the world. The Oxford Handbook of Disability History is the first volume of its kind to represent this history and its global scale, from ancient Greece to British West Africa. The twenty-seven articles, written by thirty experts from across the field, capture the diversity and liveliness of this emerging scholarship.

Unfortunately, this book is going to be well beyond most people’s pockets. It’s hardback, and the listed price is £97.00, which means that it’s only really going to be affordable to the very affluent. On the other hand, you might be able to order it from your local library, assuming that the Tories haven’t shut it down already.

What is interesting is what its publication on its own says about this as an emerging area of scholarship. It says that the history of disabled people themselves is coming to be recognised as a field of historical research and endeavour by itself, alongside other disciplines in social history like Black, women’s, and gender history. It’s possible that this is part of a change in general cultural attitudes towards the disabled, in the way that the Black civil rights and feminist movements directly caused the emergence of Black and women’s history. Unfortunately, despite this apparent change in academic attitudes, popular attitude towards people with disabilities still has some way to go. We still have the Tories closing down services for disabled people in the name of austerity, efficiency and all the hypocritical cant about concentrating resources where they’re really needed. And we still have the wretched Tory press and media demonising them as welfare scroungers. A week or so ago Zelo Street put up a post about the Spectator’s Rod Liddle attacking people with ME as malingerers, who didn’t have a real illness. To which the answer is, no, Rod, it is, they are, and you’re a soulless Murdoch hack. This wasn’t the first time he’s taken a swipe at the disabled either. A few years ago he wrote a piece about how he’d like to get a disability, that would allow him to get off work without really being disabled. Once again, he went for ME and fibromyalgia. I’ve known people with ME. They’re not malingerers, and it’s a real illness which leaves them wiped out through chronic fatigue. And it’s a long time since doctors seriously doubted whether it really existed. I think that stopped with the end of the 1980s. But obviously not in Liddle’s squalid excuse for a mind. And if you need convincing that fibromyalgia is a real disease, go over to Mike’s blog and look up some of the posts, where he mentions the suffering it’s caused Mrs. Mike. This is real, genuine pain, and definitely not imaginary. Unlike Liddle’s pretensions to objective journalism.

This looks like it could be a very interesting volume. It’s too bad it’s price puts it beyond the reach of most of us. Hopefully this will lead to further scholarship, some of which will be aimed at a less restricted audience beyond academia, and will be at a more affordable price. And I hope some of it is also taken up by activists, who use it to challenge the assumptions of Liddle and the rest of the close-minded bigots in the right-wing press and Tory party.

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More from Neurasthenia Milkshake on Ben Goldacre, ME, and Bad Science

November 2, 2015

Following my posting of their comments about ME, I got this appreciative comment from Neurasthenia Milkshake, discussing the problems at Ben Goldacre’s Bad Science website, and adding further information on the controversial nature of the findings of the Oxford scientists that, somehow, ME or chronic Fatigue Syndrome, is all ‘in the mind’. Here it is.

Why, thank you for this–what a pleasant surprise to find. This is a big story, though it never has been ,and, fortunately, it only seems to be growing. We may be coming at it from slightly different angles, but I believe firmly that there is an enormous story even beyond PACE, and if all the pieces are put together the right way by good people, it amounts to a medical scandal the likes of which I’m fairly sure nobody has ever seen. But that’s speculation, for another day, hopefully.

A last word on Ben Goldacre–this is a professional who has indeed spent a lot of his time working to expose poor science. It seems therefore a bit curious that he has never really said much about ME, or PACE, or related topics. I suppose it’s to his credit that he never lauded PACE, though it was vigorously defended on his forum.

(The backstory behind why that forum is no longer attached to his website is ugly and most definitely ME/CFS related, but with the relevant info no longer available, not provable. Let’s just say some commenters got out of hand, though in a most vicious manner ,and if I were Goldacre there would have been a time when I would have been concerned with legal action–but the ‘evidence’ has conveniently been lost. I can elaborate further, but only if requested, and specifically with the proviso that I can only describe what I know and saw, but not prove it, and Goldacre himself would almost certainly not have tolerated it, had he been aware, which I would guess he wasn’t.)

One might ask, then, why didn’t he speak up one way or another? Going on the assumption that he is indeed a crusader, I would suggest that he has connections, if not specifically to the PACE researchers (which is actually quite possible), then to their colleagues. It’s more than possible that he was not comfortable speaking up against these people. I’m sure this is not unique to this particular environment, but I have certainly heard tales of treatment of colleagues who do not share their views, and that’s not a pleasant matter, either. It’s especially frustrating, because one would hope that medical science would be devoid of such environments, all the more so when people are suffering horribly, and are treated poorly based on admittedly flawed perceptions of publications like PACE (i.e. that ME is psychological, in spite of the protests of the PACE team that this may not be so).

I apologize again for offering opinion when I would prefer to offer facts. There is a possibility Goldacre has been somewhat negligent if he spotted the flaws identified by Tuller and Coyne–but a large number of other researchers, physicians, and, importantly, journalists, never have, either. Do I point a finger at the PACE team? Yes. I point a finger at Sir SImon Wessely as well, although, with his formidable eloquence, he typically sidesteps efforts to paint him as a malevolent, all-powerful puppet master.

He is affiliated with the Science Media Centre, however. And the history of some of those folks–Revolutionary Communist Party, Living Marxism, Spiked…is something I expect someone will take a good, long look at. Someday.

Last word: you know about the DT–and you’ll know about some of the following from Tuller’s blogs.

Naturally, the NHS is still promoting CBT and GET for ME:

http://www.nhs.uk/news/2015/10October/Pages/Exercise-and-therapy-useful-for-chronic-fatigue-syndrome.aspx

In the US, so is the CDC:

http://www.cdc.gov/cfs/management/quality-of-life.html

http://www.cdc.gov/cfs/management/managing-activities.html

Although earlier this year the US Institute of Medicine issued a report saying the disease is definable by the relapse caused by exertion…

http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

While in Norway, reseachers are actually publishing studies showing success with a chemotherapeutic agent, Rituximab (not that they or anyone else find it easy to secure funding):

https://www.newscientist.com/article/dn27813-antibody-wipeout-found-to-relieve-chronic-fatigue-syndrome/

So: CBT and GET…or…a cancer/RA drug?

How is this even possible?

I find it extremely encouraging that the Norwegians should be reporting success with drug therapy. It shows the flaws in our corporatist-controlled model of the disease very clearly.

I’m not particularly interested in the specifics of the furore at Ben Goldacre’s Bad Science website. These internet fights and controversies are quite common, and have affected no end of web sites. Given the controversial nature of what went on, and that Neurasthenia Milkshake says they can only describe what they saw, but not prove, it might be best to leave it at that.

I am, however, still very interested in any information that will rebut the psychological model of ME, and any similar disease, which the DWP are trying to fob people off by saying that it’s just psychological. And I completely agree with Neurasthenia Milkshake that there is something wider going on here. My guess is that the psychological origin of this and many other disorders is simply being driven by the insurers, like Unum. It also conforms to the ideology of the transatlantic Right, which includes Blairite Labour, that people taking leave off sick are essentially workshy malingerers, who should ‘pull themselves together’. Or have a ‘short, sharp shock’, and some other nonsense.

As for Cognitive Behavioural Therapy, it has its uses as the only successful therapy in for anxiety disorders, including depression and Obsessive-Compuslive Disorder. Even here, its success rate is mixed and it doesn’t work for everyone.

It’s promotion by the Tories as a panacea for nearly every disorder and disease they can ascribe to psychological disorders reminds me of the 19th century fad, Couetism. Monsieur Couet was a French doctor, who believed people could improve their mental health by repeating the phrase ‘Every day, I am getting better and better’. Now, an optimistic attitude definitely has its benefits, but it won’t make one’s mental health automatically improve, and certainly not if there is something seriously wrong.

And I remember it most of all from one of the Pink Panther films, when the Commissionaire, finally released from the mental hospital, goes completely off the rails and becomes a Bond villain after another incident with Clouseau. The last image of him is of him frantically playing the organ, eye twitching manically, before he finally disappears into a puff of smoke, destroyed by his own laser weapon.

If only that would happen to those promoting this nonsense.

Neurasthenia Milkshake on Ben Goldacre and ME Pseudoscience

November 1, 2015

Yesterday I put up Florence’s comments about the government-approved nonsense now being peddled about ME, which conclusively showed that it was drivel. Florence herself also had experience examining the corporate influence on science, which she concluded was corrupting it, just as Stalin’s ideological and personal preferences disastrously corrupted science in the former Soviet Union.

In the article I mentioned Ben Goldacre’s Bad Science as an example of a book on spurious doctrines passed off a science. In response I received the comment below from Neurasthenia Milkshake. They liked the article, but wanted to point out that there is evidence that Goldacre himself supports the kind of rubbish the government is now trying to foist on the rest of us about the disease. They also gave further links to sites disproving the ‘all in the mind’ theory of the origin of the disease.

Here’s their comment.

Thank you for covering this. There is one issue I want to raise–Ben Goldacre, who to my knowledge has never said much about PACE, or ME/CFS for that matter. However, there has been speculation that he studied, apprenticed, or otherwise worked with, in some capacity, Simon Wessely, who in recent years has accumulated numerous honors. Obviously one can not damn Goldacre on that basis; but that there may well be a connection there is worth taking into consideration. Wessely has authored papers with members of the PACE team, has published extensively on CFS, especially CBT as a treatment modality, and praised PACE for its scientific rigor. Although Goldacre pretty much severed ties to the forum that was attached to his Bad Science website, that forum hosted vigorous debates on CFS and PACE. It almost seems odd that Goldacre would not have ever commented on PACE, but to my knowledge, again, he has not. He is not viewed with admiration amongst many ME patients due to the purported (though not necessarily substantiated) connection with Wessely, who is viewed by quite a few as a villainous figure.

Here are links to an extremely detailed deconstruction of PACE:

Installment 1: http://www.virology.ws/2015/10/21/trial-by-error-i/

Installment 2: http://www.virology.ws/2015/10/22/trial-by-error-ii/

Installment 3: http://www.virology.ws/2015/10/23/trial-by-error-iii/

Coverage in Science: http://news.sciencemag.org/health/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study

James Coyne weighs in: http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/

PACE Trial authors respond to David Tuller: http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/

David Tuller responds to PACE Trial authors: http://www.virology.ws

I have to say, I included Ben Goldacre’s Bad Science simply because it was one of the most recent and popular treatments of the subject, having been reviewed in the Groaniad amongst other newspapers, I believe. I really wasn’t aware of his own possible bias in this issue. I’m very happy, however, to put up Neurasthenia Milkshake’s comments on this, along with their further information on the pseudoscientific nature of the theory that Chronic Fatigue Syndrome is purely psychological in origin.

The idea that it is somehow all in the mind, and that CBT can cure, is pure corporate bullsh*t and should be discarded as such, along with the scientific hacks that repeat it.

Florence on Government-Approved Pseudoscience In ME and the ‘Nudge Unit’

October 31, 2015

Yesterday I blogged on Mike’s article, criticising a highly dubious report by the Torygraph that scientists at Oxford had concluded that ME, or Chronic Fatigue Syndrome, was all in one’s mind and could be cured through a mixture of exercise and Cognitive Behavioural Therapy. I took the view that this was basically pseudoscience. I got two highly interesting comments from Florence confirming this and providing further information. She writes

Reports in the literature from the USA on ME / CFS, The NIH for example, cite fMRI, PET scan (imaging of brain) evidence for CFS/ MEe, along with immunologic and inflammatory pathologies, ie it is a physical disease, with measurable physical changes in the patient. There are ample published critiques of the Oxford authors’ results, analysis and conclusions, poor experimental design and methods, and fatal flaws in the execution of the studies. Not least some medical researchers have raised ethical concerns regarding the Oxford Authors earlier PACE study, which is the basis for CBT/GET therapy in the UK. Indeed the IOM proposed a new name for the disease – Systemic Exertion Intolerance Disease, embedding the key concept of post-exercise malaise (mental or physical). So much for GET IN fact many of the committees and editorial boards of post-conference publications have expressly bewilderment and concern with the “UK model” of psychological illness. The prominence of this report in the national press demonstrates that these are the preferred Establishment scientists, and they are being rewarded for their work in providing (quasi) scientific support for a political view of this illness. Worrying.

In a nutshell, science has proven that ME is a real disease, and this tripe peddled in Oxford is purely politically motivated pseudoscience.

She adds

It dovetails nicely with the fake, and ethically-damned nudge unit foray into forced psychological “testing” of JSA claimants which was revealed a couple of years ago, plus the new forced CBT for JSA and ESA claimants in the Job Centres, illustrating the govt ideology that worklessness, like disability, is a psychological deficit in every individual. Many years ago I was asked to read & deliver my opinions on a number of publications by those working under Stalin (it was hard going). I took away a couple of things that remain relevant today. The Corporatist control of research, especially since Thatcher, has been quasi-Stalinist, and has been damaging to scientific research generally, but medical research in particular. Second, the current govt is following a descent into Stalinist state use of psychiatry and psychology against those it wants to control.

In other words, it’s just part of a general pseudoscientific model of illness that claims that somehow it’s all imaginary because this fits with Tory and Blairite attitudes to unemployment and those off sick through disability, in the same way that Stalinist policies corrupted science in the Soviet Union.

There are a number of very good books on pseudoscience, and the promotion of spurious, fake, and in the case of eugenics, murderous doctrines in the history of science. The one I mentioned yesterday was Ben Goldacre’s Bad Science.

Another book worth reading is Walter Gratzer’s The Undergrowth of Science: Delusion, Self-deception and Human Frailty (Oxford: OUP 2000).

Undergrowth Science Cover

This has chapters on the following fake science:

1. Blondlot and the N-Rays

2. Paradigms Enow: Some Mirages of Biology
Gurvich and his mitogenic radiation
The curse of the death-ray
Abderhalden and the protective enzymes
The case of the amorous toad
Memory transfer, or eat your mathematics.

3. Aberrations of Physics: Irving Langmuir Investigates
Capturing electrons
Allison’s magneto-optical effect.
Langmuir’s rules.

4. Nor any Drop to Drink: The Tale of Polywater

5. The Wider shores of Credulity
-This includes a number of weird ideas, including the controversy over Uri Geller and his supposed mental powers.

6. Energy Unlimited
– This is about Cold Fusion.

7. What the Doctor Ordered.
This includes a number of examples of extremely bad medicine, such as
-Ptosis, the doctrine that disease was caused by sagging organs, and which resulted in a fad of entirely
useless operation on perfectly healthy people, including their kidneys.
– Intestinal lavage, or colonic irrigation
– Surgical removal of parts of the colon to prevent aging.
– Monkey glands, or the surgical implantation of part of monkey testicles in order to rejuvenate people.
– Homeopathy.
– Drinking radium for your health.
– Lobotomy.

8. Science, Chauvinism and Bigotry.
This is about the growth of the nationalist belief of different countries in their own superiority as
scientists.

9. The Climate of Fear:
The tragedy of Soviet genetics
The spread of the contagion
Soviet physics: idealism, pragmatism and the bomb
Is there a Marxist chemistry?

10. Science in the Third Reich: Bigotry, Racism and Extinction
The Roots of Fascist biology
The Ahnenerbe: Himmler the Intellectual
Die Deutsche Physik (German Physics): Its friends and enemies
A deutsche Chemie (German chemistry)
Anti-Semitism and mathematics
The consequences of the Nazi incursion into science.

11. Nature Nurtured: The Rise and Fall of Eugenics
The birth of eugenics
Eugenics and politics in Europe and America
Eugenics in the Third Reich
Eugenic nemesis in the Soviet Union
The rise and fall of eugenics: a pathological science.

Ever science Sir Francis Bacon and Descartes in the 17th century, science has been one of the most powerful forces in human society for extending human knowledge, and improving health, living conditions and industrial, technological and economic progress. But it doesn’t occur in a vacuum. It’s made by humans, sometimes fallible human, who can make mistakes, sometimes with disastrous consequences. Some of this is caused when science is moulded by ideological, particular political forces, such as in the Third Reich and Stalin’s Russia. While these cases are notorious, the topic is still highly relevant today, when it seems that nearly every day the papers carry stories claiming that scientists have found the cure for this, or that a particular disease is in reality caused by such-and-such. In many cases scepticism is most certainly warranted. And in the cases of the model of disease now promoted by the DWP, these should be taken with a whole mountain of salt. It’s clear to me that Ian Duncan Smith’s and John Lo Cascio’s ideas on the origins of the disease in the unemployed should also be consigned to the dustbin of dodgy, politically motivated pseudoscience, to be included in future editions of book’s like Glatzer’s.

Vox Political: Oxford University Now Has ‘Voodoo Science’ Explanation for ME

October 29, 2015

Mike over at Vox Political has this article reporting an article in the Torygraph, claiming that Chronic Fatigue Syndrome or Myalgic Encephalomyelitis isn’t actually a real, organic disorder, but entirely psychological, according to academics at Oxford University. They believe it can be treated through positive thinking and exercise, recommending our old favourite, Cognitive Behaviour Therapy. Mike’s article begins

This is appalling. Oxford University academics are trying to tell us that sufferers of chronic fatigue syndrome (otherwise known as myalgic encephalomyelitis, or ME) can make themselves better by positive thinking.

Oh – and exercise. Have you ever tried to get an ME sufferer to do more exercise?

It seems we are heading back to the days when the condition was dismissed as “yuppie flu”.

The research so easily fits in with what the DWP and its cronies at Unum, Atos et all have been saying that This Writer half expected to see one or all of them credited as funders for the project – and was more astonished to find that it was actually funded by the Medical Research Council which, on the face of it, actually seems to be respectable.

The full article can be read at http://voxpoliticalonline.com/2015/10/28/voodoo-therapy-is-not-the-cure-for-chronic-fatigue-syndrome-oxford-university/.

This seems to be just one part of the more widespread issue of the corporate funding and corruption of science. The pseudoscientific studies advocating CBT as the miracle cure for acute illnesses leading to unemployment have come from a department at Cardiff University set up by the very businesses, like Unum, pushing them. It’s a good question, not mentioned in Mike’s article, whether the academics at Oxford university have similar connections to those business groups.

The title of Mike’s article also recalls Ben Goodacre’s book, Voodoo Science, which is all about dodgy scientific claims based on spurious or flawed research. Since Maggie Thatcher, university science departments have been forced to work with private industry in order to receive funding. At one level, you can understand the reasoning – to get value for money in terms of innovations that can be developed into marketable products. On the negative side is the discouragement of blue-sky thinking, and the promotion of inventions and products that will benefit industry, but not the public.

And this is definitely one of the latter. You should also ask whether the scientists making the statement that ME is purely psychological have produced research that has passed peer review. In order for scientific research to be considered respectable and reliable, it has to be published in a peer-reviewed publication. That means that other scientists working in the field, or related fields, have read the article and concluded that it is good science, rather than gibberish. One of the problems of contemporary science is that it much of it seems to be driven through press release and publicity, rather than more conventional avenues of publication. For example, a few years ago, you will remember, there was massive publicity surrounding the discovery of a fossil lemur, which was held to be one of humanity’s oldest primate ancestors. The two palaeontologists making the discovery released the news in a press conference in New York. The Beeb devoted a documentary to it, and even David Attenborough was drawn, though he later excused himself by saying that if you listened to his commentary careful, it was properly non-committal and littered with ‘perhaps’ and ‘maybe’s. Then came the news a few days or weeks later that the discovery was scientific nonsense. The creature wasn’t an ancestral lemur, but a type of tarsier, and so not a direct part of the line of evolutionary descent leading to humanity.

And that’s only one example. There are have been many others, mostly in the field of genetics. I’m sceptical when scientists claim that they have found the ‘gene’ for such and such a psychological disorder, such as schizophrenia, or aspects of human sexuality, like the much touted ‘gay gene’. I don’t doubt that in many cases there is a genetic component, but genetic inheritance alone does not necessarily result in a particular syndrome or psychological condition or sexuality. For example, a little while ago scientists announced that excessively violent criminals had a particular mutant gene. There was therefore a genetic reason why some crims were so violent. Another genetics scientist wrote into one of the newspapers reporting the finding to pour a bit of cold water on the ‘discovery’. Pschopathically violent criminals might have the gene, but so do half the population generally, so do probably many of the people you’re working with at the office. So, not quite the explanation for criminal violence that it claims to be, then.

Now it may be that the research on ME in the Torygraph is fine and respectable, but more than a little scepticism is warranted, especially as this is in an area, in which government and big business are pouring vast sums in order to cut the welfare budget and boost corporate profits. Just because something’s published in the broadsheets and claims to be science doesn’t mean that it’s as well established as Newton’s Laws or Einstein’s Theory of Relativity. And this in particular looks like prize rubbish.

The approach the authors of this research recommend is actually quite dangerous. Go down through the comments to the article to find first-hand accounts from people with the disease or similar illnesses on the dangers they have suffered from treatments like that recommended by the scientists of the Oxford study. From their experiences, I’d say that this looks like well-argued, but dangerous pseudoscience.