Posts Tagged ‘Science Media Centre’

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.

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