CFS etc over on Bad Science

[Min]

Thank you Adam, I too ask for this thread to be closed, the Bad Scientists are just winding sick people up here for their own amusement, one recent post says of it:

"there's something of a religious fever to their forums anyway so I doubt it'd take much to bring the torches and pitchforks out."

& "There is a thread discussing the Myhill hearing on the Phoenix Rising forum as well, here. Only 23 pages at present, but the first posting on page 22 is sad. I'm tempted to post, but somehow, I don't think I (a) be welcome or (b) be listened to. It's their forum, so I'll simply watch, aghast."

& a charming example of a scientific comment, this time about professor Malcolm Hooper:

"This Hooper's actually a bit of a c***, innee?"

(why do these so-called 'scientists' have such a seemingly adolescent problem with female genitalia - perhaps they should leave the basement occasionally and interact with the real world)

Please,please, if the forum isn't closed stop feeding the trolls by engaging with them - their 'scientific' minds are closed. Any unexplained illness is psychosomatic to them, no more biomedical research is needed, full stop.

 

[alphahusky]

There does seem to be a very strong opposition to psychology here, which I'm curious to understand more - it almost seems to me at times that some of you object to a psychological cause because you feel that people are saying it's not 'real' in some way?

QUOTE]


No, we object to treating a serious physical disorder as psychiatric because it denies people who are sick effective treatment. Instead, people are being treated with useless or often harmful treatments (such as CBT and GET) when, if the research money were used properly, etc., we might have had effective treatments years ago. See, when MS was called "hysterical paralysis", a bunch of patients were committed (sectioned) and forced to try to walk when they were paralyzed, subjected to "analysis", and other BS. When actual physical research was done, they discovered the physical markers or causes, and suddenly people with educated about it, sufferers were given actual medical treatments that have helped, and they were given proper care. People with ME/CFS are currently in the first boat. We'd like proper care. Not just antidepressants, CBT, and GET. Do you know that Wessley has said that even if this is caused by a retrovirus, he wants it to continue to be treated in the same manner, and people denied effective treatment like anti-retrovirals if they prove effective? Guess he gets pissed that people with HIV aren't in the psychiatrists' offices.

 

[insignificant]

If this thread is going to get locked at some point (which I don't understand because it seems to be mostly civil), then there's not much point in anyone from the Bad Science forums posting here anymore (which some of you might regard as a welcome development). There are lots of things that I'd like to discuss/clarify at some point (mostly things that Angela has mentioned), but I haven't got the time at the moment (ditto for Martin Robbins I think; he has a full-time job and several election-related pieces for the Guardian on-the-go atm) and I'll just end up asking other people elsewhere about them if this thread gets locked (and Martin won't be able to respond to any of the allegations that have been made against him).

Take care/good luck.

 

[biophile]

Reaching out

mjrobbins says:

What would be interesting would be to canvas some of your views... what do you think should be happening with research in this area, where do you think the current problems are institutionally (government, academia, NGOs?), what do you think is the most promising research at the moment, and so on.

There is too much to read over at the BadScience forums at the moment, so I have only skimmed through some of it. I would still like to give mjrobbins and others a chance to demonstrate their "reaching out" is genuine. The topic of ME/CFS and related issues is rather involved and complicated, it takes a while to get a decent grasp on the various aspects of it. However, there is little point further engaging in the research and other issues mentioned by mjrobbins if the two forums cannot even resolve the simplistic "stigma of mental illness" misunderstanding, so let us start with that.

People wonder why patients appear to be sensitive to the possibility or accusation they are mentally ill. Even without discussing the nature of ME/CFS, the following context needs to be understood. Patients are commonly denigrated precisely because other people assume the symptoms are psychologically induced or perpetuated. This contrasts with the lofty notions such as "there is no stigma surrounding mental illness" and "mental illness is just as real as physical disease", the common experience of patients has been the exact opposite. In many cases, patients have no diagnosis or treatment whatsoever, and can experience a medical limbo that even those diagnosed with mental illness do not usually experience.

Patients have also been accused of "misinterpreting" Wessely et al. But apparently many health care professionals have the same "misinterpretations" and impose it onto their patients along with pre-existing prejudices that are simply not supported by the evidence. Even if for the sake of argument we assume that Wessely's work is reasonable, the supposed "correct interpretation" (which is debatable) represents an ideal, whereas the reality of the health care system is more like the alleged "misinterpretation". Sooner or later the patient traces all the psychobabble back to the highly dubious history of psychology, psychiatry, and lay mind-body "expertise", all of which have different standards to the "hard sciences".

Debunking CAM and correcting delusions are two favourite activities among many skeptics, so ME/CFS becomes a soft target because many patients use CAM out of desperation and the illness is stereotyped as being one of "abnormal illness beliefs" (Wessely is usually seen as the king of that perspective). I am not an advocate of Myhill or a fan of CAM in general, but I think people should be able to experiment if they need to.

Further to Angela Kennedy's (astute as usual) comments regarding the double-standards on "woo", I wonder what would be uncovered if said skeptics looked into the biopsychosocial and cognitive behavioural approaches to ME/CFS with the same zeal and depth they possess for CAM. Would they explore the relevant claims or concepts, source the primary research, question the methodology, and search for similar studies or systematic reviews to confirm that "cherry picking" has not occurred? This is something the ME/CFS communities have had to do for themselves.

 

[Gerwyn]

Thank you Adam, I too ask for this thread to be closed, the Bad Scientists are just winding sick people up here for their own amusement, one recent post says of it:

"there's something of a religious fever to their forums anyway so I doubt it'd take much to bring the torches and pitchforks out."

& "There is a thread discussing the Myhill hearing on the Phoenix Rising forum as well, here. Only 23 pages at present, but the first posting on page 22 is sad. I'm tempted to post, but somehow, I don't think I (a) be welcome or (b) be listened to. It's their forum, so I'll simply watch, aghast."

& a charming example of a scientific comment, this time about professor Malcolm Hooper:

"This Hooper's actually a bit of a c***, innee?"

(why do these so-called 'scientists' have such a seemingly adolescent problem with female genitalia - perhaps they should leave the basement occasionally and interact with the real world)

Please,please, if the forum isn't closed stop feeding the trolls by engaging with them - their 'scientific' minds are closed. Any unexplained illness is psychosomatic to them, no more biomedical research is needed, full stop.

I dont actually see any evidence that they have minds that can engage in any kind of scientific thoughts.They are clearly unable to understand scientific thinking or distinguish scientific evidence from speculative opinion..lacking this basic foundation then I dont consider the term scientific when applied to their minds appropiate. I feel very strongly that we as aforum should stop using this description of their minds as it is an obvious caricature and in the spirit of fair mindedness we should cease using this terminology immediately!

 

[flex]

It seems to me that the bad science site is more in need of a complaint to the GMC for the appalling way Ben Goldacre allows it to be a vehicle to attack and ridicule people with ME. Some of the language is absolutely disgusting and the misguided understanding of ME is medieval.

In my opinion the "charges" against Dr Myhill will not stand and if this is the case the real truth will be out along with a clearer understanding of how deluded doctors with outdated ideas gang up on progressive scientists.

The truth is also being told about Simon Wessely to the members of the appropriately abbreviated website BS and their cult hero Ben Goldacre who is simply to stupid not to realise a case is being built against him and his website by his own ill informed and foul mouthed members.


So BS folk carry on posting, we will carry on pasting and therefore you shall become the authors of your own downfall.

Thankyou for bringing the case against yourselves with Ben Goldacre yet again at the helm. Lots of people didn't even realise he was a player in the new labour spin machine pretending to out bad science. Well now they do! They have realised that he is there to stand against descent of policy based "medicine" in the guise of a doctor (laughable) for the people.

No doubt he will be appearing on television soon in his usual "poor me" style claiming to be a doctor and turning on the waterworks as he rambles on about being picked on by a bunch of horrid nasty patients and scientists.

Bla Bla Bla ben we have heard it all before!!

Ben Unless you speak out against Wessely you are going to end up going down with him.

 

[Martlet]

Just to let people know that - with one exception since he has not said anything in this forum that can be construed as offensive - the trolls I have identified have been banned. If there are enough genuine members who would like to continue this discussion, please PM me.