BMJ b/s painting PWME as threatening psych patients

[Wonko]

Psychiatrists are scientists? I know they seem to produce lots of sciency sounding type papers, but I wasnt aware they understood the basic principles of 'science' at all. Dogma, an almost religious faith in their own theories, this they understand, but science?

IMO psychiatrists aren't scientists - they're priests at best, corporate PR men at worst.

 

[alex3619]

Psychiatrists are scientists? I know they seem to produce lots of sciency sounding type papers, but I wasnt aware they understood the basic principles of 'science' at all. Dogma, an almost religious faith in their own theories, this they understand, but science?

IMO psychiatrists aren't scientists - they're priests at best, corporate PR men at worst.

HI Wonko, I agree and disagree. I think many are indeed scientists but only if they have a good classical education in science, did a science degree, or a lot of extra study on their own. Way too many in the medical profession (not just psychiatrists) think that a medical degree is as good as a science degree. That is almost as bad as a scientist thinking they are as good as a medical professional. One does science, the other diagnoses, treats and monitors patients. They are very different. A medical degree is mostly fact cramming - real science is typically absent. With postgrad medical degrees, where candidates require a degree (typically science) this might change. This is only true however if the undergrad degree is more than just fact cramming - knowing a lot of facts about science does not make you a scientist. Nor does a basic science degree, like I have. Unfortunately, in too many cases even a PhD does not make scientists. I have met many PhDs who I am not impressed with at all, lets leave it at that to be polite, while some have impressed me a lot.

However, on biopsychosocial theory, its all a house of cards. I keep waiting for the day it all collapses. Hopefully enough evidence will arise on the PACE trials to lead to a proper enquiry, and the whole card house will crash - but I seriously doubt it, its just a hope. I have no faith at all in ANY of the institutions that are supposed to prevent dodgy science from gaining a foothold.

Let me use PACE as an example. CFS that is not CFS. ME that is not ME. Fatigue that is not fatigue. Functional capacity that is not functional capacity. Pacing that is not pacing. Recovery that is not recovery. Adverse events that are not adverse events. Much of what I see is semantic games, and has no scientific validity, but they think that because they use similar names that the medical profession will be fooled. In part they are right, but I think most are simply unaware of the problems (they never really looked), and more are cowed by the public officials or their own societies and don't speak up. Only a very brave or committed few do the investigation, draw their own conclusions, and then speak up. Very few indeed.

Bye
Alex

 

[Enid]

@ Bob - post 81

I quite agree - gradually efforts begin to make a mark on deaf ears. And there is some marvellous research going on now - don't see anything of the scare "frightened off" suggested/claimed by the psycho clique. Perhaps it's "all in their mind".......wishful thinking. In any case a situation they have created if there.

 

[alex3619]

I would like to put forward an alternative proposal about "scientists" being frightened off. What evidence do we see that psychiatrists are being frightened off? What about biomedical scientists?

What I see is lost of psychiatrists running scared - they should be, the entire biopsychosocial movement may be about to be severely discredited.

On bioscientists, I see more and more engaging, more and more interested, they are starting to see a mystery here and want to solve it.

So what if some psych investigators leave or get turned off? Its a good thing if they were only going to do research based on psychosomatic theories. We need psychiatric research too, but not more psychosomatic white elephants. We also need bioscience research far far more than psychosomatic research.

Bye
Alex

 

[Enid]

And we (together) will get there alex - not only illness to cope with daily but a whole branch of medicine gone wrong.

 

[justinreilly]

Funny I don't hear Komaroff at Harvard and Montoya at Stanford complaining about ME patients. Real researchers have nothing to fear.

Exactly right. Bona fide scientists and clinicians are loved by us. People who abuse us and lie about us are criticized by us and I hope they stop researching ME. They keep saying they have or are but then don't. I sure as hell don't want the trolls on ERV blog doing 'science' on ME.

The reason research is not done is that there is no funding and the fake scientists try to destroy the reputation of the real scientists and patients. I do think there is some over-the -top criticism of some bona fide scientists like Dr. Peterson. But it's very little in the scheme of things. IVI, pls don't contribute to the false impression that ME advocates are overly aggressive with real scientists. This only hurts the science.

 

[In Vitro Infidelium]

There are a large number of CFS researchers who never complain about CFS patients.

The researchers who complain the loudest happen to be the ones who members of the ME/CFS community perceive are carrying out an injustice.
I think that most ME/CFS patients are able to distinguish between somebody like Simon Wessely and someone like, for example, Jonathan Kerr.
One is perceived to have an agenda, and to be doing an injustice towards the ME community for questionable motives, and the other is perceived to be a researcher who has no agenda, other than to carry out decent, honest scientific research.

What struck me about the Nigel Hawkes BMJ article was that in 20 or so years, the psychiatrists don't seem to have worked out why sections of the ME/CFS community are against what they do, and fundamentally disagree with their approach to the disease. (You'd think that they might have asked by now!)
So, either these scientists have extremely poor interpersonal & listening skills, or they are extremely unintelligent, or they are purposefully ignoring patients and following their own agendas regardless of the truth, the science, and the legitimate issues that patients raise.
The psychiatrists are protesting complete innocence and ignorance of the issues, and just keep repeating the mantra that ME patients are confused, unreasonable and unscientific. It doesn't seem very grown up, or intelligent, to say the least!

I don't think that any of this really needed spelling out to most of us on this forum, but I have just in case it's helpful for IVI.

So there is an approved list . Those who [some] members of the/[an assumed] ME/CFS community perceive are carrying out an injustice are deemed fair game because they started it. Even if this were a reasonable summation of the situation, what audience, other than the M.E/CFS ingroup, or the various anti science/anti psychiatry crank fests, do you think would actually take it seriously ? For most academics, attacks on researchers are seen as generic an attack on one researchers is an attack on all researchers this may not be fair, but it is the realpolitik within which medical advocay has to operate. The more that personal and professional attacks are made on those researchers (and it isnt just Psychiatrists) who dont fit with the paradigm demanded by vocal M.E/CFSers (claiming to be an advocate doesnt make it so) the more that M.E/CFS affected people are identified as cranks who cant be listened to because to do so is to pander to their/our craziness.

Theres a very important dictum applied in both political campaigning and in marketing, that is one never, unless its absolutely unavoidable, acknowledges the opposition not even their existence. Perhaps because of the US political system where there is little distinction between candidates and negative campaigning has become the norm ( if one has no unique selling point the only option is to attack the competion) the prevailing idea of advocacy is that perceived enemies have to be attacked but this really is not smart if in doing so one loses the trust of the wider audience whose goodwill one needs to achieve the campaign goals.

Equivocation by anti-vivisectionists over the terror tactics employed by some animal rightists, profoundly reduced the validity accorded to the campaign to reduce animal experimentation, thats a a cautionary tale which we will fail to learn from at our considerable cost.

IVI, you do seem to have a vast capacity to write words... I wonder if you have ever thought of putting your writing capacity to productive use for the ME/CFS community?

There's two apprehensions involved in the question - firstly that there is a single monolithic ME/CFS community, that is identifiable and/or amenable to benefit from productive use - that's something which is not at all clear however much it may claimed to be true; secondly that I don't already put such skills as I may have to productive use in relation to M.E/CFS afffected people. If I did/do indeed take any role in advocacy, support or political or academic engagement, I would not in any circumstances discuss the specifics of it on an open forum. From my own perspective writing here has a some validity in that I'm giving voice to views that are held at least by a minority of M.E/CFS affected people, even though few have the inclination to particiate in the online forums to express those views.

IVI

 

[Enid]

Count me out IVI as a real not "assumed" member of the ME/CFS community and for whom in ways we are variously capable will pursue. (and by what ever means being a bog standard law abiding citizen until ME is known, accepted and understood for what it is - including what it is not).

 

[In Vitro Infidelium]

I sure as hell don't want the trolls on ERV blog doing 'science' on ME.

But what choice do you have ? Are you saying that you prefer the existence of a poisonous engagement because that would result in 'the trolls' being put off fom being involved in M.E/CFS research ? What happens if in five years time ERV or some other current Phd virologists who has seen the highly negative interchanges between some researchers and some (claimed) M.E/CFS affected people, is asked as a (by then) team leader to put in a bid for M.E/CFS research funding - do you believe that the project brief will reflect validity of M.E/CFS as an organic illness ?

None of us know what direction M.E/CFS research will go, we have no idea what scientific disciplines will be involved, nor can we tell who will be the key researchers - it's just as likely to include some arrogant current doctoral student who posts unsympathetic replies on a science blog, as it is to include Klimas or Komoroff (actually more likely as the doctoral student has a much longer career ahead of them).

IVI

 

[voner]

propagation of the BMJ article on F1000.

I follow this website, F1000, -- because it's a good source for research information. from what I can determine -- a lot of research scientists (from all disciplines) use this site.

They're pretty much propagating the BMJ article.

http://blog.the-scientist.com/2011/06/29/its-all-about-me/

at least StephanCFS has replied so far -- he seems to be receptive to receiving some information and being educated ( unlike some scientists/people).......

 

[Enid]

Simply part of the medical culture - 4 Docs in my own family (various specialists) and very cautious about precisely whom they choose for their own and I'm sure those at the BMJ would seek the most knowlegeable in any illness if able. Their is a careful selection process going on by patients and physicians. But we are denied the now considerable knowledge about ME/CFS quite outside the psychiatric field.

Response to IV post 90.

 

[floydguy]

But what choice do you have ? Are you saying that you prefer the existence of a poisonous engagement because that would result in 'the trolls' being put off fom being involved in M.E/CFS research ? What happens if in five years time ERV or some other current Phd virologists who has seen the highly negative interchanges between some researchers and some (claimed) M.E/CFS affected people, is asked as a (by then) team leader to put in a bid for M.E/CFS research funding - do you believe that the project brief will reflect validity of M.E/CFS as an organic illness ?

None of us know what direction M.E/CFS research will go, we have no idea what scientific disciplines will be involved, nor can we tell who will be the key researchers - it's just as likely to include some arrogant current doctoral student who posts unsympathetic replies on a science blog, as it is to include Klimas or Komoroff (actually more likely as the doctoral student has a much longer career ahead of them).

IVI

So you're saying that the research world is more Days of Our Lives than a place for serious thinkers trying to advance knowledge and solve problems. I don't disagree. Really, if a researcher makes an assessment based on what they read on an internet blog (ERV no less) then the research world is even worse off than I thought.

 

[WillowJ]

There are indeed some serious scoundrels in the "CFS" research world who actually deserve sound condemnation, not death threats or mad rants but the fair strong criticisms that they are not doing actual science by scientific principles; namely, they have terrible experimental design, are (by all appearances purposefully) ignoring essential evidence, changing goalposts (evidently to make the data appear to fit preconceived notions about how it should turn out), and so forth.

It would be wrong not to criticize them. They are endangering the health and lives of patients. This always, always necessitates that someone speak up. No exceptions. It would be immoral and unconscionable to allow them to carry on unprotested.

However, that is a very small group of "scientists". The rest of the scientific world is likely merely complacent. These deserve positive engagement. And I see no evidence that they are getting anything else, from the majority of the ME/CFS community.

There is the problem that we have been neglected, patronized, abused, and insulted for far too long. We are sick and tired of the malfeasance and medical neglect, and our patience has worn thin. I think we deserve a little grace from the outside world.

All the same, we should do our best to try to use positive engagement with everyone who isn't a bona fide member of the Wessely School of Miscreants.

 

[Sam Carter]

Exactly right. Bona fide scientists and clinicians are loved by us...

.. IVI, pls don't contribute to the false impression that ME advocates are overly aggressive with real scientists. This only hurts the science.

I disagree with your analysis, Justin. Look at how attitudes changed towards Singh, Huber, Coffin and Peterson when they published work suggesting there was no association between XMRV and ME. For this offence they are now "deniers" and "contaminationists" and considered part of some nefarious cabal.

 

[Sam Carter]

IVI, you do seem to have a vast capacity to write words... I wonder if you have ever thought of putting your writing capacity to productive use for the ME/CFS community?

Do you not believe IVI's contributions to the forum are productive, Bob?

 

[Dolphin]

IVI, you do seem to have a vast capacity to write words... I wonder if you have ever thought of putting your writing capacity to productive use for the ME/CFS community?

Do you not believe IVI's contributions to the forum are productive, Bob?

I think people can fall into the trap of always criticising from the sidelines. I recall IVI criticised the tone of letters in reply to the Lancet - see, for example, second comment under: http://www.meassociation.org.uk/?p=6181 , when the tone of the letters and in particular the tone of the letters that were published was quite measured. If he feels he can do better, I would suggest he leads by example at least some of the time. I have more respect for people who at least sometimes "do" - I'm guessing this is the sort of point Bob had in mind. You learn by doing incl. you also can get a better insight into why some people might do things a certain way (and can get an idea whether there might be a better way or not).

 

[Bob]

Do you not believe IVI's contributions to the forum are productive, Bob?

If an individual consistently and persistently criticises and insults the entire ME patient community, then it can definitely feel unproductive, and it can feel rather frustrating and demoralising at times. I think that constructive engagement would be more productive than persistent critisism and arguments for argument's sake.

 

[floydguy]

I disagree with your analysis, Justin. Look at how attitudes changed towards Singh, Huber, Coffin and Peterson when they published work suggesting there was no association between XMRV and ME. For this offence they are now "deniers" and "contaminationists" and considered part of some nefarious cabal.

I think you have that wrong. I think many were unhappy that this crew has taken it upon themselves to suggest that their work was the final say in XMRV/MLVs. Their conclusions were that it would be a waste of time to continue research in this area. And then to top it off felt compelled to say that ARVs shouldn't be taken. I think many people are okay with well meaning negative studies it's the ridiculous, overreaching conclusions that are made that make people upset. I really don't see how their conclusions can be supported especially when they don't have ANY alternative explanations for ME. It's especially galling when Lipkin et al are continuing along in their research.

 

[Valentijn]

So there is an approved list . Those who [some] members of the/[an assumed] ME/CFS community perceive are carrying out an injustice are deemed fair game because they started it.

I think it is fair to make such a division when viewing research. We know from experience that certain researchers, no matter what results they get, will find a way to cast their results in a certain light. Usually a rather insulting one, for people that have endured many types of misery for a long period of time. Being told that we are a bunch of malingering mouth-foaming nutcases hurts, even when done using polite and scientific language from a very long distance, by someone that has never met us and we don't care about in the least. By labeling them as the enemy, it's much easier to shield ourselves from the psychological impact of reading those messages.

For most academics, attacks on researchers are seen as generic an attack on one researchers is an attack on all researchers this may not be fair, but it is the realpolitik within which medical advocay has to operate. The more that personal and professional attacks are made on those researchers (and it isnt just Psychiatrists) who dont fit with the paradigm demanded by vocal M.E/CFSers (claiming to be an advocate doesnt make it so) the more that M.E/CFS affected people are identified as cranks who cant be listened to because to do so is to pander to their/our craziness.

I think that you have a valid point here. We must be very conscious of the image we create as a community, and keep in mind that the non-CFS community doesn't have the experiences of this disease and those "doctors" that we do. We need to frame our arguments and rebuttals in terms that they can understand and accept.

Theres a very important dictum applied in both political campaigning and in marketing, that is one never, unless its absolutely unavoidable, acknowledges the opposition not even their existence.

I'm afraid that it is unavoidable in the case of CFS. The quacks have taken over treatement of it in the UK, are making strong attempts in that direction in the Netherlands, and probably aren't far behind in Australia and the US. If we stay silent when they speak in arenas that influence treatment policy, theirs is the only voice that will be heard. That is absolutely unacceptable.

Equivocation by anti-vivisectionists over the terror tactics employed by some animal rightists, profoundly reduced the validity accorded to the campaign to reduce animal experimentation, thats a a cautionary tale which we will fail to learn from at our considerable cost.

I think pretty much everyone agrees that extremism is counterproductive. But I think it's important to distinguish extremism from ardent advocacy, and to support, not dissuade, each other from participating in advocacy. We have vital needs that are not being met, and it would be and has been a mistake to sit quietly in the corner and let those needs be easily ignored.

There's two apprehensions involved in the question - firstly that there is a single monolithic ME/CFS community, that is identifiable and/or amenable to benefit from productive use - that's something which is not at all clear however much it may claimed to be true;

This statement strikes me as needlessly divisive. I feel a very strong sense of community with other ME/CFS sufferers. They know what I'm going through, they're supportive, and many are have persisted through trials that would make Job weep with despair and they are very inspirational for a newbie like me. Even when there are fundamental disagreements about treatment options, they are handled with grace and tolerance.

secondly that I don't already put such skills as I may have to productive use in relation to M.E/CFS afffected people. If I did/do indeed take any role in advocacy, support or political or academic engagement, I would not in any circumstances discuss the specifics of it on an open forum. From my own perspective writing here has a some validity in that I'm giving voice to views that are held at least by a minority of M.E/CFS affected people, even though few have the inclination to particiate in the online forums to express those views.

I'm sure we all appreciate your theoretical advocacy efforts. It is indeed very unfortunate if there are CFS patients that feel uncomfortable in expressing their views here, and it is very generous of you to take the time to do it for them.

 

[Esther12]

I think you have that wrong. I think many were unhappy that this crew has taken it upon themselves to suggest that their work was the final say in XMRV/MLVs. Their conclusions were that it would be a waste of time to continue research in this area. And then to top it off felt compelled to say that ARVs shouldn't be taken. I think many people are okay with well meaning negative studies it's the ridiculous, overreaching conclusions that are made that make people upset. I really don't see how their conclusions can be supported especially when they don't have ANY alternative explanations for ME. It's especially galling when Lipkin et al are continuing along in their research.

To argue that though, surely you should think that Mikovits should be equally condemned for suggesting that ARVs should be tried. Different researchers can disagree about the state of the current evidence, and whether it is reasonable to try using ARVs for CFS - I don't have a problem with that, but I do think that some of the criticism of Singh, Huber, Coffin, Kerr, etc has been unfair.

It's difficult to be clear about this - I think it's fine to point out possible problems with their work... but it does seem like there are a handful of CFS patients (quite possibly less than 5 in the whole world!) who instantly start accusing any researcher who doesn't think that CFS and XMRV are related of being incompetent, crazy or corrupt. I don't want to impugn all those who are critical of the current negative studies, but some of the criticism seems really unfair to me (eg: it looked like Singh worked really hard to do a thorough study for us. Even though it's result makes me think that we're not closer to a treatment/understanding of CFS, I'm still grateful for all the effort she put in - although I'm still hoping it turns out that she's wrong!)