J
jonathan sizz
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I'm not, and I'm not aware of anyone at BS, arguing that there aren't important controversies that have yet to be settled over the aetiology and definition of CFS/ME. CFS/ME isn't the issue here.
Dr MyHill's License in Jeopardy
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Recommending is not the same as restricting or ordering.
Previous complaints to the GMC have come to nothing, so what has changed? Why is the information only now a danger to the public?
Where does she specifically say, do not use an inhaler? She does offer another approach, but never actual says do not use inhalers.
How do you know that Myhill will actively endeavour to make the material available elsewhere? Don't forget the same information is easily accessible to any ordinary citizen though multiple avenues.
Since when was asking for support unprofessional? And when did she ever initiate any vexatious correspondence? The individual is responsible for the content of their correspondence, not Dr Myhill.
As the hearing was not their to assess the facts of the case, Dr Myhill was unable to provide evidence to back up her assertions. She will only be able to do this, if they decide to assess her fitness to practice.
The facts of the case should speak for themselves, not whether she has tried to defend herself. These are yet to be addressed.
Previous complaints to the GMC have come to nothing, so what has changed? Why is the information only now a danger to the public?
Where does she specifically say, do not use an inhaler? She does offer another approach, but never actual says do not use inhalers.
How do you know that Myhill will actively endeavour to make the material available elsewhere? Don't forget the same information is easily accessible to any ordinary citizen though multiple avenues.
Since when was asking for support unprofessional? And when did she ever initiate any vexatious correspondence? The individual is responsible for the content of their correspondence, not Dr Myhill.
As the hearing was not their to assess the facts of the case, Dr Myhill was unable to provide evidence to back up her assertions. She will only be able to do this, if they decide to assess her fitness to practice.
The facts of the case should speak for themselves, not whether she has tried to defend herself. These are yet to be addressed.
Angela Kennedy
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Well, with respect Flex, this has become quite a big issue. A BSer has used inflammatory language about a doctor who specialises in ME/CFS patients (he called her an 'uber-quack', for example) in order to tell people he's reported her to the GMC. The BSers then wrote reams and reams of ad hominem and insult, have made theories of mind about the community at large, about Myhill supporters, trivialised the concerns of those people about the implication of her having her licence suspended etc. misrepresented the ME/CFS community as mad, their concerns about the psychiatric paradigm as unreasonable, individual advocates as unreasonable and fixated on Simon Wessely, as contemptuous of mental illness, etc. etc. etc. in a thread on their forum that went on for pages and pages.
Which was why I THEN started the original thread - I was VERY concerned at how the ME community and their supporters were being misrepresented, independently of the Myhill case itself.
This raised their ire - some of em came over here, made personal insults on THEIR forum against members DARING to answer them on THIS forum etc. But in the meantime - the ME/CFS communities and their supporters have been subject to high amounts of ridicule and arguments from ignorance, if any of use dare raise the issues, say of the problems of psychogenic explanations, we are characterised as unreasonable, or stupid, or 'extreme' etc. etc. A microcosm of what is done to advocates regularly - but this time, we have had a 'journalist', MJRobbins, here also, and he too is negatively disposed towards the community. What absolute rubbish is going to be written in an article about ME/CFS in the future is a fair question.
I really think it is not a case of 'kiddies playground' here. That's the sort of thing's said by adults who can't be arsed to sort out problems in the playground etc. for one thing. How can we possibly have a rational debate with people who are not prepared to listen to the fair and rational points advocates are trying to make? My comments about the BSers are based on the evidence of how they have conducted themselves on the Myhill and CFS threads. Why are they even over here in the first place, if they are not prepared to listen and engage reasonably? Why does insignificant have to run back to the BSers instead of reasonably engaging with me here, for instance? Well to do that - he/she would have to not have me be characterised as 'extreme' and actually take my points and engage, here, reasonably.
I would LOVE to see the BSers prove my concerns and consequent comments about their conduct and worldview wrong - by using actual rational analysis and not some sort of trumps game with evidence interspersed with ad hominem and condescending behaviour towards the ME/CFS community and its members.
But this presumes they are people with the power and wisdom to do such a thing (which they sort of promote - Ben Goldacre allows that with his 'activism' thread for one thing). But they're just a bunch of people on a forum who tend to let the forum owner be hero-worshipped and sometimes bask in that glory (I'm not trying to be offensive here - but I'll bet money offence will be taken and even ranted about over on BS). This latest campaign by BSers has raised some big questions about motivations etc. But with the old smoke and mirrors of 'teh internets' it's impossible to know for certain who such people are, and why exactly they've alighted on an already maligned community, and this forum in particular.
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Simon Wesseley posted a comment on scepticat's blog post/article about Dr Myhill's GMC hearing and the "board wars" etc. - link to comment - you may or may not find that interesting.
I'm also aware that ME/CFS is a catch-all/wastebasket diagnoses for a group of patients that might be suffering from several different things. In fact, one of the outcomes of this discussion for me has been a reluctance to use the term "ME/CFS" in case it upsets people. I end up referring it as "something from the wastebasket" instead (the illness that is, not the people who suffer from it!)
I also don't know what to say to people who say their ME has been cured, whether by Myhill (as someone called Helen Maybanks says on the "SUPPORT DR SARAH MYHILL" facebook page claims) pages, or people I know who have made almost full recoveries by using things that both people here and myself are highly suspicious of.
If ME (currently) has no cure (it can only be managed with varying degrees of success), is anyone who claims to have been cured by X not suffering from ME?
(I tried to have a discussion with you, Angela, but that thread got locked and I was banned, remember?)
I'm also aware that ME/CFS is a catch-all/wastebasket diagnoses for a group of patients that might be suffering from several different things. In fact, one of the outcomes of this discussion for me has been a reluctance to use the term "ME/CFS" in case it upsets people. I end up referring it as "something from the wastebasket" instead (the illness that is, not the people who suffer from it!)
I also don't know what to say to people who say their ME has been cured, whether by Myhill (as someone called Helen Maybanks says on the "SUPPORT DR SARAH MYHILL" facebook page claims) pages, or people I know who have made almost full recoveries by using things that both people here and myself are highly suspicious of.
If ME (currently) has no cure (it can only be managed with varying degrees of success), is anyone who claims to have been cured by X not suffering from ME?
(I tried to have a discussion with you, Angela, but that thread got locked and I was banned, remember?)
flex
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Angela I am aware of ALL of the above. The fact is either we just keep hitting back with facts or we dont bother to engage with them or we will just encounter more of the same. Getting involved in a cat and mouse argument is not going to do any good and there are always people who will set out with that as their full intention.
I am at the point where I really dont care what the BS folk say because its just BS. ( two different meanings there).
flex
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Well said V99. Particularly the inhaler comment which is something I meant to address earlier but you put it so well, I was stuggling how to phrase it.
The idea of recovery is a little difficult to answer. At the end of the day, the definition in the UK, and more recently in the US, has been expanded a great deal. Many will be diagnosed with CFS in the UK, but not actual have ME, for instance, stress related Chronic Fatigue. Therefore it wont be their fault if they believe themselves recovered from CFS. The other issue is the relapsing remitting nature of ME. Patients may have a period of recovery, but then the ME flares again.
Most will agree (Expert medics & patients) that post exertional exacerbation of symptoms is one of the core symptoms. The Canadian criteria includes this, the Oxford does not.
As for which name to use, I doubt anyone here would like the CFS/ME one.
ME/CFS can be ok, but not to all.
CFS in the US is correct, but some will prefer ME. The CDC says ME is not CFS, but does not have a diagnostic criteria for ME. So those with ME, get diagnosed with CFS.
ME in the UK is appropriate, but is not used to diagnose anymore. Now the UK uses CFS/ME, but not in the same way the US did CFS. It is a very broad definition, and basically means Chronic Fatigue the symptom.
More recently the US did alter their definition of CFS, it looks like the UK CFS/ME now. This was unhelpful to researchers, and will hopefully be changed now that the CDC CFS program leader has been removed.
As for XMRV - is it CFS or ME, or both. Well it ain't Chronic Fatigue, nor is it Fatigue Syndrome. It may well be the UK ME - best way to find out? Test those in the UK originally diagnosed with ME. As for everyone else, have to wait and see, but very possibly.
Most will agree (Expert medics & patients) that post exertional exacerbation of symptoms is one of the core symptoms. The Canadian criteria includes this, the Oxford does not.
As for which name to use, I doubt anyone here would like the CFS/ME one.
ME/CFS can be ok, but not to all.
CFS in the US is correct, but some will prefer ME. The CDC says ME is not CFS, but does not have a diagnostic criteria for ME. So those with ME, get diagnosed with CFS.
ME in the UK is appropriate, but is not used to diagnose anymore. Now the UK uses CFS/ME, but not in the same way the US did CFS. It is a very broad definition, and basically means Chronic Fatigue the symptom.
More recently the US did alter their definition of CFS, it looks like the UK CFS/ME now. This was unhelpful to researchers, and will hopefully be changed now that the CDC CFS program leader has been removed.
As for XMRV - is it CFS or ME, or both. Well it ain't Chronic Fatigue, nor is it Fatigue Syndrome. It may well be the UK ME - best way to find out? Test those in the UK originally diagnosed with ME. As for everyone else, have to wait and see, but very possibly.
flex
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Please read the full text above alluded to by Angela Kennedy and you will see the full nature of the remarks made on BS about this forum, us and ME.
Why don't you take Wessely and Goldacre and Lord Sainsbury to task on your forum if what you say above is true. Are you to afraid you will find connections?
By the way ME is the issue on this Forum something which escapes the thourough scrutiny of the BS site and one Mr Goldacre who so conveniently by passes the unscientific injustices done to the ME community over the last 30 years. The more you get it wrong with Dr Myhill the more we will be driven to get it right with your deti Ben Goldacre and the puppet masters pulling his strings.
R
Robin
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Yes! I have asthma! I can't find where she says to not use an inhaler.
Did she change her site? On this page http://www.drmyhill.co.uk/wiki/Acute_asthma_-_how_to_recognise_and_treat she advises people to use a bronchodilator during an attack. And she says:
Honestly, long term beta agonist inhalers can worsen brochospasm.
Sorry, I'm nit picking!! I honestly see where you're coming from, and some of the things she says are indeed worrisome and controversial, but, it's frustrating when a critic such as yourself doesn't take a minute to read the source material.
I said earlier, and I'll repeat, I think she's in the crossfire of a larger skirmish in the medical community between conventional and alternative medicine and ME/CFS is being dragged into it. Others have pointed out that physicians who have killed and maimed patients have been treated with softer hands than Myhill, so it's not an unreasonable conclusion.
To what purpose do forays to this board serve? Obviously a patient group long neglected by conventional medicine are turning to alternative medicine. Is that so shocking? Most people go to graduate school to get a science education, and yet people posting here from BS, some admitted academics, are expecting patients to understand the finer points of medical evidence?
But the most frustrating is what is being said there:
Why don't you go to a cancer woo support forum and make fun of those patients at BS? Here, I found one for you, have at it! http://community.breastcancer.org/forum/79
@insignificat: a small percentage of people recover from ME/CFS.
The CDC and NICE both say it is about 7 to 10%.
CDC http://www.cdc.gov/cfs/cfsbasicfacts.htm
[/QUOTE] average of only 5% to 10% sustaining total remission.[/QUOTE]
insignificat. They talk about remission, not recovery, as you can see.
Can't find the NICE quote at the mo.
Esther12
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Most of the people here are going to read his comments in the light of his past work - this can make us seem unfair to the man to those less interested in CFS though. In this post he was being quite honest, in his own way - he thinks it's possible that CFS is a physical condition in the same way that schizophrenia is. I agree that this is a possibility, but think it was a rather evasive way of answering the concerns that many patients have about his work.
biophile
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Biforum interaction and the placebo effect
I assume Angela K is talking about this post, where Bad Science poster [insignificant] responds over there to several quotes from here: http://badscience.net/forum/viewtopic.php?f=3&t=15693&start=4575#p345707
OK fair enough, but does not really address Mark's concern about the scientific validity (and questionable history) of "somatisation disorder" and related concepts pushed upon ME/CFS patients. Notions relating to placebo effect, psychosomatic, somatisation disorder, somatoform disorders etc, have commonly been used as a "god of the gaps" in medicine. What patients want is precision rather than ambiguity.
It seems to me Angela K responded to what was first going on at the Bad Science forums. I could be wrong but I do not really want to plough through the hundreds of posts that existed before the 23rd April 2010.
I do not know why Angela K's comments are interpreted as conflating the placebo effect with "the whole somatisation disorder thing". She does not mention "somatisation disorder" at all, at least in anything quoted by [insignificant]. If anything she mentions "psychosomatic" as an example of a "mere claim", like "placebo effect". It was Mark's quote which mentions somatisation disorder, but [insignificant] should be aware of this because they labelled Mark's post about somatisation disorder as "Mark/moderator from over there wrote:".
Then there is a reply to [insignificant]'s post from [Eleanor C]: http://badscience.net/forum/viewtopic.php?f=3&t=15693&start=4575#p345714
Where does Angela K even remotely indicate that placebo = no treatment?
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We have noticed a trend among some skeptics of putting much time and energy into criticising CAM but not mind-body ideology. Angela K used the placebo effect as an example of something Ben Goldacre believes in the face of good evidence to the contrary. I presented the 2010 Cochrane systematic review on the placebo effect as a brief reality check for anyone who boasts about the wonders of the placebo effect, but I also used the qualifying phrase "at risk of over-simplifying the debate" because the issue is rather involved. I certainly do not reject the equivalent of a mind-body connection, but there is just so much psychobabble and neurobabble and endobabble surrounding it that we cannot take at face value.
[mjrobbins] says he is an "equal opportunity sceptic". To those here that do not know what this is, it means he applies critical reasoning to all subjects with equal fairness. ME/CFS communities want the psychiatric literature and biopsychosocial articles to be subject to the same level of skepticism imposed upon CAM and biomedical literature. Perhaps something similar could be said for the authors behind the literature?
I assume Angela K is talking about this post, where Bad Science poster [insignificant] responds over there to several quotes from here: http://badscience.net/forum/viewtopic.php?f=3&t=15693&start=4575#p345707
OK fair enough, but does not really address Mark's concern about the scientific validity (and questionable history) of "somatisation disorder" and related concepts pushed upon ME/CFS patients. Notions relating to placebo effect, psychosomatic, somatisation disorder, somatoform disorders etc, have commonly been used as a "god of the gaps" in medicine. What patients want is precision rather than ambiguity.
It seems to me Angela K responded to what was first going on at the Bad Science forums. I could be wrong but I do not really want to plough through the hundreds of posts that existed before the 23rd April 2010.
I do not know why Angela K's comments are interpreted as conflating the placebo effect with "the whole somatisation disorder thing". She does not mention "somatisation disorder" at all, at least in anything quoted by [insignificant]. If anything she mentions "psychosomatic" as an example of a "mere claim", like "placebo effect". It was Mark's quote which mentions somatisation disorder, but [insignificant] should be aware of this because they labelled Mark's post about somatisation disorder as "Mark/moderator from over there wrote:".
Then there is a reply to [insignificant]'s post from [Eleanor C]: http://badscience.net/forum/viewtopic.php?f=3&t=15693&start=4575#p345714
Where does Angela K even remotely indicate that placebo = no treatment?
-
We have noticed a trend among some skeptics of putting much time and energy into criticising CAM but not mind-body ideology. Angela K used the placebo effect as an example of something Ben Goldacre believes in the face of good evidence to the contrary. I presented the 2010 Cochrane systematic review on the placebo effect as a brief reality check for anyone who boasts about the wonders of the placebo effect, but I also used the qualifying phrase "at risk of over-simplifying the debate" because the issue is rather involved. I certainly do not reject the equivalent of a mind-body connection, but there is just so much psychobabble and neurobabble and endobabble surrounding it that we cannot take at face value.
[mjrobbins] says he is an "equal opportunity sceptic". To those here that do not know what this is, it means he applies critical reasoning to all subjects with equal fairness. ME/CFS communities want the psychiatric literature and biopsychosocial articles to be subject to the same level of skepticism imposed upon CAM and biomedical literature. Perhaps something similar could be said for the authors behind the literature?
Angela Kennedy
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Thank you to biopsychobabble for this clarification. Spot on as usual!
I did actually write on post #323 that: "'placebo' means no treatment, and in trials the correct term is 'placebo response'. " I need to clarify what I mean a little more closely (I was writing on the hop at the time!)
The OED (an excellent place to start because we are talking about language here, including the instabilities in the medical lexicon) gives the following definitions of 'placebo':
"A medicine or regime provided for the psychological benefit to the patient rather than for any physiological effect... a substance that has no therapeutic effect, used as a control in testing new drugs ... a measure designed merely to calm or humour another."
I was alluding to placebo response in clinical trials (where it IS a 'non-treatment' ) - and how certain people incorrectly extrapolate this as an 'effect' to be applied per se. I've actually only TOUCHED briefly on the problems in claims around 'placebo effect'.
Looking at the above OED definitions, immediate problems present themselves in terms of 'psychosomatic' explanations (that terms is itself used confusingly in the medical/psychiatric literature. It opens up a whole new can of worms in terms of confusion of concepts!) - but 'placebo' is not intended to describe actual physiological therapeutic treatment as such.
This is where we get into the claims to be able to transcend 'mind-body dualism' (a subject alluded to by biopsychobabble (great name by the way!), themselves conceptually/linguistically unsound and subject to ideological wishful thinking. Then there's the problems around the multiple and confusing meanings of the term 'psychosomatic' and its synonyms in the medical lexicon, and the way authors/clinicians/even lay media and public use these terms. That way lies the land of 'woo' and 'mind-body healing' beliefs...
Massive issue with massive conceptual problems and empirically inadequate as well. I've been working on the subject -like others - for years now.
'Somatisation' and 'somatoform'? Aaagh! is one response. Advocates have highlighted, very well, the fallacious reasoning in these diagnoses in submissions to the DSM only recently, as collated by MEAgenda. I could write a lot on these problems, as could others here and elsewhere. I have written about them before.
However, lay advocates making refutations (rather than medical bods making sometimes ludicrous conjectures) don't often get published in medical journals- and the trumps game around reference sources over on BS means those forumites are likely to ignore or make ad hominem on those and other works. Hence my frustration with the apparent inability of the BSers to employ rational analysis rather than fallacious appeals to authority, and their apparent uncritical faith in the idea of 'psychogenic' illness per se. They are NOT currently acting like 'equal opportunity skeptics' and of course that level of inconsistency is going to rankle people.
...and then off he goes again, no doubt a-mazing all those new to "There Is No Sun" theory with his revolutionary and groundbreaking insights into the nature of the mind and the body and the body and the mind and how confusing and mixed up together it all is. Which shell is it under now?
Regular readers will not need to investigate further, as they know what is coming. Of course he allows the possibility of a physiological cause. They are mis-reading what he has said on the subject most recently; everyone should check out his latest change of heart, see Wessley et al in "Yet Another Rubbush ME/CFS Paper We Couldn't Replicate (just as we predicted - told you so), Vol 94". From the long-running bi-weekly series, based on the popular template.
There you can read all about his nuanced position and how he DOES think there's a physical cause, he is just goddamn cock-sure certain for some reason that it will never be found and it would be a waste of time looking for it, and this latest theory is especially unlikely because it's so similar to some of the other theories that didn't pan out in the past.
From GWS to Camelford, ME/CFS to low-level persistent radiation and tumours, you name it, we can't find it - faster, more energetically, and in larger numbers than those who can, and here's a study of studies to prove it all over again. Just counting the total score so far and...oh that's quite extraordinary...in a shock result predicted at the start if the match by everybody on the pitch, guess what in the Bad Science Cup it's Hopeless Searchers 3 Suspicious Oddballs 1, after a procedural ruling determined that the Suspicious Oddballs' 3 goals should only count as 1, whereas the Searchers' brilliant lightning-response hatrick - 3 sublime goals in quick succession during the half-time interval - should certainly not be merged into one and filed under "Psy (sigh)" as detractors assume. For the full peer review see the work of the fully-accredited peers Haha, Joker and Naffoff Vol 94, yesterday.
Of course he believes there might be a physical cause, darling, of course he does. Just not today...
flex
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Exactly Mark.
Of course on top of that is the issue that he and his failed profession are desperately trying to equate themselves with real medicine like virology immunology and neurology. They are desperately trying to create the illusion that their is such a thing as "bio markers of psychiatric diseases". (Plan B if all else fails). Of course the idea of a psychiatric disease is a complete contradiction of terms which makes it even more laughable. However it smacks of "we want to play with the big boys cos our theories are obviously so transparent that yet again we will have to redifine psychiatry" and "we messed up again who is ever gonna believe any of the drivalous sh*t that slips of our tongues in the name of science". The problem for them is that plan B redifines psychiatry right out of existance.
So long have they milked the government cash cow and sold their backsides to the insurance industry, that their industry, which is nothing but a marketing whordom is in desperate need of yet another bail out package. Of course they always have the guys over at BS many of whom have admitted to being struck by psychological and mental health issues to continue making a pretty pound from. All they have to do is keep such people imprisoned within the "mental health industry" unabled by their superiors or too trusting to think for themselves and its champagne for everyone!!
So here comes the "bio marker" psyche whore with plan B, to "save us from the stigma of an infectious medical disease".
I'm laughing all the way to the toilet because its my ablution time and the psyches are laughing all the way to the bank!! Unfortunately because of their failing profession, very soon the only bank that they will be able to deposit in may well be a sperm bank.
Tune in next week when psyshitatry ( deliberate spelling mistake) discovers that XMRV is a "psychiatric disease".
Of course on top of that is the issue that he and his failed profession are desperately trying to equate themselves with real medicine like virology immunology and neurology. They are desperately trying to create the illusion that their is such a thing as "bio markers of psychiatric diseases". (Plan B if all else fails). Of course the idea of a psychiatric disease is a complete contradiction of terms which makes it even more laughable. However it smacks of "we want to play with the big boys cos our theories are obviously so transparent that yet again we will have to redifine psychiatry" and "we messed up again who is ever gonna believe any of the drivalous sh*t that slips of our tongues in the name of science". The problem for them is that plan B redifines psychiatry right out of existance.
So long have they milked the government cash cow and sold their backsides to the insurance industry, that their industry, which is nothing but a marketing whordom is in desperate need of yet another bail out package. Of course they always have the guys over at BS many of whom have admitted to being struck by psychological and mental health issues to continue making a pretty pound from. All they have to do is keep such people imprisoned within the "mental health industry" unabled by their superiors or too trusting to think for themselves and its champagne for everyone!!
So here comes the "bio marker" psyche whore with plan B, to "save us from the stigma of an infectious medical disease".
I'm laughing all the way to the toilet because its my ablution time and the psyches are laughing all the way to the bank!! Unfortunately because of their failing profession, very soon the only bank that they will be able to deposit in may well be a sperm bank.
Tune in next week when psyshitatry ( deliberate spelling mistake) discovers that XMRV is a "psychiatric disease".
...and an army of chronically sick patients sitting both patiently and impatiently while doctors trained by Morris et al patronise them with an alice-in-wonderland introduction to that magical land of woo, where nothing is what it seems and nobody - least of all physicians - can be trusted to mean what they say and say what they mean. The documentation is piled high: It is standard policy that we do not deserve honest treatment. The manual says: Lie. And the weekly research blogs investigate and comment on our paranoia and rage, and we fume at how our precious public funding has been sequestered.
"You are imagining it. There is no illness. There is only psychology. There is no alternative treatment. Alternatives will be exterminated."
- would at least be an honest statement of Clinical Policy for the Medically Unexplained - a rapidly expanding sector of unknown potential size. Then we could all see that if we follow this path it leads us nowhere but to the dead end of End of Miedicine theory, a branch of End of Sun theory and a properly dark matter that needs a good dose of light shining on it before it is filed away in the long grass.
He is deffinately sanitizing himself, very gaulling - pretty soon he will say he was at the vanguard of pushing for a physiological cause and will morph into his new incarnation - he is a real shape shifter and this makes him even more dangerous and unpalatable. Unlike BG who can't but help but proclaim his "genius" from the roof tops. W is as slippery as an eel, that no one ever challenges some of the double speak he comes out with reminds me of the story of the Emporers new clothes when I was little. I have also heard stories of him getting newspapers to delete archived articles which painte dhim in a bad light.