Dr MyHill's License in Jeopardy
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flex
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Ok folks just read the blog Dr Rita Pal and the defense case presented by Dr Myhill. The case is not over and the job today ,it seems, was an "intermediate hearing". However the case against her is littered with technical errors, incompetence, obvious duplicitous statements and dubious allegations to say the least.
It will not stand up in a legal sense and is in fact laughable. However its obvious that the attempt is to ruin her in the meantime. Infact today was really just a first stage hearing, I dont know if they had the power to actually throw the case out - although they should have.
It appears a full investigation must now take place. God knows how that will play out. Hope she can hold out and fight. We need to come up with support scheme and possibly a legal plan/fund to back her. I hope she is cabaple and resourced enough to do this with the team she has around her if not this fight is not over on our behalf.
It will not stand up in a legal sense and is in fact laughable. However its obvious that the attempt is to ruin her in the meantime. Infact today was really just a first stage hearing, I dont know if they had the power to actually throw the case out - although they should have.
It appears a full investigation must now take place. God knows how that will play out. Hope she can hold out and fight. We need to come up with support scheme and possibly a legal plan/fund to back her. I hope she is cabaple and resourced enough to do this with the team she has around her if not this fight is not over on our behalf.
Yes we need to look beyond our community, yes it is cock-up rather than conspiracy, yes people look to their own careers and comfort first, unfortunately.
KISS
Keep it simple stupid
is a great maxim.
This may need to be continued in a less public way.
Mark, you are right.
Maarten, hats off to your clear sight through the nonsense
Chris has a way forward
Flex, your earlier work is a good start.
If I didn't need to look up spellings so often, and correct typos, this post might make sense......
KISS
Keep it simple stupid
is a great maxim.
This may need to be continued in a less public way.
Mark, you are right.
Maarten, hats off to your clear sight through the nonsense
Chris has a way forward
Flex, your earlier work is a good start.
If I didn't need to look up spellings so often, and correct typos, this post might make sense......
C
CheeseOnToast
Guest
Might I humbly suggest that Dr Myhill's first course of action in fighting this battle be to provide respectable evidence for the controversial claims on her website and to remove the claims for which she can find none.
She did herself no favours today by simply asserting that the GMC should simply recognise her authority, on her word, while neglecting to provide support for the veracity of the claims in question.
It should be noted that her opinions on CFS/ME were not addressed by the complainants, nor were they flagged as concerning by the panel and the restrictions placed on her will not significantly affect her ability to provide advice to CFS/ME sufferers.
This is not a crusade against CFS/ME.
She did herself no favours today by simply asserting that the GMC should simply recognise her authority, on her word, while neglecting to provide support for the veracity of the claims in question.
It should be noted that her opinions on CFS/ME were not addressed by the complainants, nor were they flagged as concerning by the panel and the restrictions placed on her will not significantly affect her ability to provide advice to CFS/ME sufferers.
This is not a crusade against CFS/ME.
R
Robin
Guest
Advise, not treat. Some patient, by taint of their diagnosis, struggle to even get basic care from their physicians and turn to understanding people like Myhill.
I understand where you're coming from, as a skeptic. If you learn anything from the support of Myhill here, maybe you can understand that patients, many of whom have lost educations, careers, spouses, even children, many have become impoverished and some homeless, are so vulnerable, underserved, overlooked (and often disparaged) by the medical community that they are desparate for any treatment or care. This is a silent horror story that you've stumbled upon.
I have to agree with you on the basis that her ME/CFS literature was not addressed in the judgment.
The complaint/action seems to be part of the larger drama being played out between conventional and alternative providers.
Tammie
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definitely interested in following up on this, if someone from outside the UK could make a difference.....too foggy and upset about the whole Dr Myhill verdict to really re-read what you wrote on the original thread rt now, but i do remember when you started this, that I thought it was a good idea
C
CheeseOnToast
Guest
What are her treatments for ME/CFS? Are any of them prescription only? Honest question, here, I honestly don't know.
I actually think there's some value in harmless treatments being provided if they make the individual feel better - even if there's no evidence base to support their efficacy*. The placebo effect has its place. And, occasionally, real, efficacious treatments are found this way.
I'm all for research into a physiological basis for ME/CFS. So are most of the people on the Bad Science forum, which you (this forum, not "you" as an individual) seem to have somewhat unfairly adopted as a nemesis. However, I do think there is a danger if we start to say that it's okay for anybody to market any treatment, without evidence, simply because people are desperate and can find no answers elsewhere. And I'm sure you can appreciate why. The folk on Bad Science don't want to ridicule or belittle you, they just don't want to see a situation where desperate people can be easily exploited. That's their main motivation.
I'm sure if you go read the Bad Science forums dispassionately you'll find that no-one is claiming that ME/CFS is trivial and if you go over there and speak to people civily without immediately accusing them of being part of some kind of sinister cabal that's out to toe the line of big pharma dogma (nothing could be further from the truth, big pharma frequently gets a serious kicking on those forums and by Ben Goldacre too) then the people there will embrace you and constructive dialogue can be had.
*within reason. I'm wary of entire medical philosophies being used in this way (e.g. homeopathy) because I think it may lend credibility for their purported use in things like, for example, providing immunity against malaria and treating metastatic cancer.
flex
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Cheeseontoast,
you have to understand this in the context of decades of blockade by the government, insurance companies and various other bodies progressing medical advancements in ME. A crusade or a conspiracy is not the correct phrase in this context. Further more what good is a doc who cannot prescribe medications that her patients can testify is of benefit to them. You seem to object to harmless treatments being tried ( if indeed they are harmless admittedly) and not to the forceful nature of the establishment to implement and prescribe intoxicating drugs with serious proven side effects. I for one and probably millions of others was given medication by my neuro to try for my ME (neuro immune disease) that is usually used for Parkinsons disease. It was a disaster and i stopped it after a week. That was done, I believe the term is, "of list" where a doc uses a medication that is not deemed for the actual presenting illness. I have no doubt everyone here and millions of other people have had similar experiences. Why is this OK for one doc but not another? No patient has ever even complained about the effects of such treatments prescribed by Dr Myhill.
I would love to read the controversial claims that the GMC have claimed are on her website. It is for them to highlight the controversial nature and the exact claims not for individuals to filter the whole site and remark on things they don’t like.
ME is listed as a neuroimmune disease it is listed separately to fatigue, chromic fatigue, chronic fatigue syndrome, somatisation, burnout etc etc.
Please understand this point. Dumping all the above titles together under the umbrella term CFS is not scientific and infact the psychiatric lobby under a certain professor of psychiatry and co have been reprimanded by the WHO for attempting to describe them as one condition.
This is something the folks at the Bad Science site just seem unable to grasp and they either don’t want to or are dangerously happy with this style of medical practice essentially controlled by vested interest groups. This does not describe a conspiracy nor a crusade. It is simply corruption and bastardising of science by a handful of immensely powerful people who have the ability to shape policy and dismiss science. You seem to think that Quackery exists only outside of conventional medicine and never in commercial instances where government money can be absolutely creamed of to the detriment of patients.
They also started a lie possibly born out of ignorance and when they got in too deep decided to keep going - kind of like a little child not knowing how to stop. At What point could they stop and say “oh listen we have been lying for years”.
The bio markers that you believe not to exist in ME have been published thousands of times but do not form “official studies” because it is not in the interest of the opposite parties.
If your child ever presents with neuroimmune problems will you be happy for a psychiatrist to take over their medical care.
Its not a crusade but please suggest an apt word or summary for a neuroimmune disease recognised as such by every medical authority worldwide being run and controlled and grouped together with every spurious definition of "fatigue" illnesses. This is actually illegal practice and a million times more damaging than any allegations made against Dr Myhill.
People are having to suffer unbearable consequences of this CBT and GET lark. Do not forget the implicated XMRV virus that may end up at your door due to medical and governmental negligence over decades. Many of us here have already tested positive for this retrovirus (HIV aids is a retrovirus). Those are the ones of us under the "CFS" blanket that actually have ME a neuroimmune disease.
Get your head around this sentiment from a famous UK psychiatrist. 1 million people in the UK have "CFS" we expect that the majority of them will not test positive for XMRV. Then he goes on to say at least three quarters of them wont. Most ME advocates know there are approx 250,000 ME sufferers in the UK.
HMMM!!!!
Please stop inadvertently and condescendingly addressing us here as people with "fatigue" or people with "real issues" or such like. We are the ones with this illness. If you want to address depressed or stressed or burnout people please go to the appropriate sites where your viewpoints may carry some merit. Of course you could stick around here and in time could have samples of our XMRV retro virus blood to have a little play around with.
If you don't know what a retrovirus is capable of go and have a good read up on it. This retrovirus exists it is not disputed by any scientist anywhere in the world. However a couple of rushed panic studies run by UK psychiatrists have tried to claim after studying dubious blood patient cohorts ( namely non ME) that it is not even present in this country. Little did they know many of us had already tested positive.
Now pull that apart with your bad science heads!!!
Esther12
Senior Member
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I don't think that is fair.
I think that it's very difficult for patients suffering from a serious and poorly understood medical condition like CFS to talk about and assess it with the sort of detached rationality which would be ideal for any sort of debate. It also seemed that a lot of the people on Bad Science didn't have much of an understanding of the problems faced by CFS sufferers. As such, there was something of a culture clash, people stopped trying to listen to each other and it just denigrated into a slanging match.
From what I've seen on Bad Science, there have been a lot of dismissive and condemning statements about the people on this forum too. I don't think that the people here chose Bad Science as a nemesis any more than you did us.
ps: There really is no 'us' here either. Almost everyone here has CFS, but there's no uniting ideology in the way that there is with Bad Science (well - a preference for better treatment of, and more research into CFS would be pretty widespread.)
ETA: Rather than derailing the thread again with a new post I'll update this one with a note for Bad Science viewers:
It's a personal view, but I think we would all get along a lot better if we all understand the radically different objectives of these two forums. Here we are, in practice, much more of a community based on shared experience and understanding rather than a wide-open forum for debate. Very different cultures. I personally think there is some room for overlap, and great value to us in genuinely concerned people who question our assumptions, but Bad Science members here need to remember that we are not here for big arguments about subjects that 99% of us already agree on (based on our decades of lived experience). We can re-hash all the old arguments and expose ourselves to all the old cliches yet again, any time we want, any place we want...those of us who have the energy for it...but here, most of us enjoy conversing with people who actually know what they're talking about.
Here on this thread, for example, we are mainly focused on sharing concerns over the Dr Myhill case, venting our frustrations about it all, working out what the implications are for patients, whether we will lose access to medication, how we can help defend her, etc etc. I do think there's a potential role for 'outsiders' to helpfully advise us where we've misunderstood the legal and even scientific issues, for example, but if that's going to work, we're all going to need to try hard to remain calm and try to develop some trust and common ground. And if we do all start wandering off topic, let's remember we can always spin off a separate thread or use PM for off-topic discussions.
And to forum members: please let's try to remember that people who really have come here to learn more about us don't necessarily know about all the buzz-words and cliches and misunderstandings that drive us to distraction. Perhaps we could do with a 'guidelines for outsiders' thread where they can be sent to learn how not to get kicked off! And/or a special place they can go to be educated (by those with the patience for it) about the politics, and the stuff they are sceptical about, and all the stuff we experience that supposedly doesn't exist. As ever, I'm just chucking ideas out there...:Retro smile:
ETA: The following point was a misunderstanding due to parallel posting, but I'll leave it in for the sake of continuity and the wider point I'm trying to make:
Flex, your post is an excellent slice of background for CheeseOnToast, lots of solid points of course, as always. But I don't think you've fairly assessed CheeseOnToast's standpoint, based on the text on the thread. Be careful not to make assumptions about what people think, especially based on their membership of a group. I could cite a few examples, but the first one that crops up is the starkest so I'll just cite that:
Anyway, as a general plea to everyone, please let's be careful to stick to responding to what people actually say rather than what we imagine their motives and views might be.
And lets also all try to remember that this thread is about Dr Myhill, we may be at risk of wandering off-topic (and yes I know, I'm as guilty as anyone...sorry...emotions are running rather hot at the moment for all of us...)
It's a personal view, but I think we would all get along a lot better if we all understand the radically different objectives of these two forums. Here we are, in practice, much more of a community based on shared experience and understanding rather than a wide-open forum for debate. Very different cultures. I personally think there is some room for overlap, and great value to us in genuinely concerned people who question our assumptions, but Bad Science members here need to remember that we are not here for big arguments about subjects that 99% of us already agree on (based on our decades of lived experience). We can re-hash all the old arguments and expose ourselves to all the old cliches yet again, any time we want, any place we want...those of us who have the energy for it...but here, most of us enjoy conversing with people who actually know what they're talking about.
Here on this thread, for example, we are mainly focused on sharing concerns over the Dr Myhill case, venting our frustrations about it all, working out what the implications are for patients, whether we will lose access to medication, how we can help defend her, etc etc. I do think there's a potential role for 'outsiders' to helpfully advise us where we've misunderstood the legal and even scientific issues, for example, but if that's going to work, we're all going to need to try hard to remain calm and try to develop some trust and common ground. And if we do all start wandering off topic, let's remember we can always spin off a separate thread or use PM for off-topic discussions.
And to forum members: please let's try to remember that people who really have come here to learn more about us don't necessarily know about all the buzz-words and cliches and misunderstandings that drive us to distraction. Perhaps we could do with a 'guidelines for outsiders' thread where they can be sent to learn how not to get kicked off! And/or a special place they can go to be educated (by those with the patience for it) about the politics, and the stuff they are sceptical about, and all the stuff we experience that supposedly doesn't exist. As ever, I'm just chucking ideas out there...:Retro smile:
ETA: The following point was a misunderstanding due to parallel posting, but I'll leave it in for the sake of continuity and the wider point I'm trying to make:
Flex, your post is an excellent slice of background for CheeseOnToast, lots of solid points of course, as always. But I don't think you've fairly assessed CheeseOnToast's standpoint, based on the text on the thread. Be careful not to make assumptions about what people think, especially based on their membership of a group. I could cite a few examples, but the first one that crops up is the starkest so I'll just cite that:
...whereas CheeseOnToast actually wrote:
I rather like that position actually. I've never understood how anti-homeopathy campaigners can complain that it only works because it's just a form of placebo effect - if placebo is so damn good, why not let people who want it have it? :Retro smile:
Anyway, as a general plea to everyone, please let's be careful to stick to responding to what people actually say rather than what we imagine their motives and views might be.
And lets also all try to remember that this thread is about Dr Myhill, we may be at risk of wandering off-topic (and yes I know, I'm as guilty as anyone...sorry...emotions are running rather hot at the moment for all of us...)
flex
Senior Member
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I believe our two posts crossed over and the remark :
"I actually think there's some value in harmless treatments being provided if they make the individual feel better... "
was posted after my long post which I was editing on Word. I acknowledge the above remark.
"I actually think there's some value in harmless treatments being provided if they make the individual feel better... "
was posted after my long post which I was editing on Word. I acknowledge the above remark.
No charges. No case. No evidence. Draconian rubbish order. Uproar to ensue
So as a reminder of what this particular thread is about:
BBC News - "Patient praises specialist doctor before GMC heading" (Video):
http://news.bbc.co.uk/1/hi/wales/8651442.stm
Daily Mail - "Chronic fatigue syndrome specialist treating patients with 'no clinical basis'":
http://www.dailymail.co.uk/health/a...al-basis.html?ito=feeds-newsxml#ixzz0mXts3A14
Wales Online: "Drugs Ban For Chronic Fatigue Doctor":
http://www.walesonline.co.uk/news/w...sed-on-chronic-fatigue-doctor-91466-26344340/
ProHealth: (links to relevant parts of Dr Myhill's site):
http://www.walesonline.co.uk/news/w...sed-on-chronic-fatigue-doctor-91466-26344340/
Twitgoo: Demo Pictures:
http://twitgoo.com/pyjyb
and the best headline for last...
OneClickGroup Twitter Feed - "No charges. No case. No evidence. Draconian rubbish order. Uproar to ensue":
http://twitter.com/OneClickGroup
So as a reminder of what this particular thread is about:
BBC News - "Patient praises specialist doctor before GMC heading" (Video):
http://news.bbc.co.uk/1/hi/wales/8651442.stm
Daily Mail - "Chronic fatigue syndrome specialist treating patients with 'no clinical basis'":
http://www.dailymail.co.uk/health/a...al-basis.html?ito=feeds-newsxml#ixzz0mXts3A14
Wales Online: "Drugs Ban For Chronic Fatigue Doctor":
http://www.walesonline.co.uk/news/w...sed-on-chronic-fatigue-doctor-91466-26344340/
ProHealth: (links to relevant parts of Dr Myhill's site):
http://www.walesonline.co.uk/news/w...sed-on-chronic-fatigue-doctor-91466-26344340/
Twitgoo: Demo Pictures:
http://twitgoo.com/pyjyb
and the best headline for last...
OneClickGroup Twitter Feed - "No charges. No case. No evidence. Draconian rubbish order. Uproar to ensue":
http://twitter.com/OneClickGroup
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Very powerful post flex .That brought tears to my eyes, with extreme sadness, ,frustration and anger
Angela Kennedy
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Ok - got to say this - Oh no, the 'placebo effect' again.
People who think there's this mighty power of the 'placebo effect' do not know the scientific literature on this. I do. 'placebo' means no treatment, and in trials the correct term is 'placebo response'.
The 'placebo effect' is merely a claim, rather like 'psychosomatic'. The evidence 'supporting' any 'placebo effect' is extremely poor, usually based on self-reports and even then of 'psychological conditions' NOT objective measurements in organic conditions etc.
If 'placebo' was a Sarah Myhill treatment- it would be considered 'woo' or 'quackery' or whatever. My own frustration with BSers is partly related to their inability to understand these basic issues - especially because they do consider themselves so knowledgeable about 'evidence' based etc. and indeed about science!
And because it does seem we still have at least one BSer on this forum, and because the issue of BSers has been brought up by them as a little stick on this thread, I will repeat this:
"When i first encountered Ben Goldacre and the Bad Science forum, I actually, in my utter naiviete, wondered whether he, or they, might be prepared to consider the case of what has happened to the ME/CFS comunity. It is such a clear case of 'bad science' and 'woo' I thought they would be all over it!
I've since learned that Ben Goldacre himself has a massive blind spot when it comes to psychobabble and 'mind-body healing' beliefs. His section on 'the placebo effect' in his book, in stark contrast to his apparent rationalist sceptical stance, reads like an account of a 'true believer', using the poorest of evidence to support that account. Perhaps this is informed by his mentors - don't know. This also seems to be the case with the members of the forum in general.But there is also the issue of rationalist, critical 'scientific' analysis VERSUS appeal to scientific 'authority', which are two different things, and for which the vast majority of BSers appear wedded to the latter. This is evident in their 'trumps games' around sources for example, where who and where it is written trumps anything else about a source. It is a highly naive way of looking at things at best, often degenerates into a power game at worst (and we see this on wikipedia also.)
A careful sifting through of evidence, including analysing arguments etc. for coherence, empirical adequacy, comprehensiveness etc. appears outside of the abilities of many people claiming scientific authority.So it seems psychogenic explanations and therapies such as CBT, as woo-ey and irrational and confused/ing as they are, will not be subject to critical analysis over there because they are state-medically sanctioned wooquackery (a new word I made up! Ooh - inappropriate joking again...) Authority trumps rational analysis."
Since I wrote that I think now I should qualify the assertion about BSers - I actually mean BSers on the Sarah Myhill and CFS threads. Nevertheless, the phenomenon I am so concerned about is still extant. But my concerns are of course not limited to BS - there's a trend in this naive way of looking at things.
People who think there's this mighty power of the 'placebo effect' do not know the scientific literature on this. I do. 'placebo' means no treatment, and in trials the correct term is 'placebo response'.
The 'placebo effect' is merely a claim, rather like 'psychosomatic'. The evidence 'supporting' any 'placebo effect' is extremely poor, usually based on self-reports and even then of 'psychological conditions' NOT objective measurements in organic conditions etc.
If 'placebo' was a Sarah Myhill treatment- it would be considered 'woo' or 'quackery' or whatever. My own frustration with BSers is partly related to their inability to understand these basic issues - especially because they do consider themselves so knowledgeable about 'evidence' based etc. and indeed about science!
And because it does seem we still have at least one BSer on this forum, and because the issue of BSers has been brought up by them as a little stick on this thread, I will repeat this:
"When i first encountered Ben Goldacre and the Bad Science forum, I actually, in my utter naiviete, wondered whether he, or they, might be prepared to consider the case of what has happened to the ME/CFS comunity. It is such a clear case of 'bad science' and 'woo' I thought they would be all over it!
I've since learned that Ben Goldacre himself has a massive blind spot when it comes to psychobabble and 'mind-body healing' beliefs. His section on 'the placebo effect' in his book, in stark contrast to his apparent rationalist sceptical stance, reads like an account of a 'true believer', using the poorest of evidence to support that account. Perhaps this is informed by his mentors - don't know. This also seems to be the case with the members of the forum in general.But there is also the issue of rationalist, critical 'scientific' analysis VERSUS appeal to scientific 'authority', which are two different things, and for which the vast majority of BSers appear wedded to the latter. This is evident in their 'trumps games' around sources for example, where who and where it is written trumps anything else about a source. It is a highly naive way of looking at things at best, often degenerates into a power game at worst (and we see this on wikipedia also.)
A careful sifting through of evidence, including analysing arguments etc. for coherence, empirical adequacy, comprehensiveness etc. appears outside of the abilities of many people claiming scientific authority.So it seems psychogenic explanations and therapies such as CBT, as woo-ey and irrational and confused/ing as they are, will not be subject to critical analysis over there because they are state-medically sanctioned wooquackery (a new word I made up! Ooh - inappropriate joking again...) Authority trumps rational analysis."
Since I wrote that I think now I should qualify the assertion about BSers - I actually mean BSers on the Sarah Myhill and CFS threads. Nevertheless, the phenomenon I am so concerned about is still extant. But my concerns are of course not limited to BS - there's a trend in this naive way of looking at things.
biophile
Places I'd rather be.
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A reality check on the placebo effect
Angela Kennedy is correct. There is a long history of wonderful claims about the placebo effect. It seems like "everyone knows" about it too. Do these videos mean we count Ben Goldacre as a "believer"? ( http://www.badscience.net/2010/04/placebo-nocebo ). Perhaps the most relevant and updated source is a 2010 Cochrane systematic review (apparently a gold standard amongst some Bad Science forumites), which examined over 200 trials for the placebo effect in 60 clinical conditions.
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/20091554
PDF: http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003974/pdf_fs.html
"The trials investigated 60 clinical conditions: alcohol abuse, allergy, anaemia, anxiety, aphtous ulcers, asthma, attention-deficit hyperactivity disorder, bacterial infections, benign prostatic hyperplasia, blood donation reactions, breathlessness, bulimia nervosa, carpal tunnel syndrome, compulsive nail biting, dementia, depression, dermatitis, difficulty of colonoscopy, diabetes, dry eye, enuresis, epilepsy, faecal soiling, fatigue, gag reflex, herpes simplex infection, irritable bowel syndrome, hypercholesterolaemia, hyperglycaemia, hypertension, ileus, infertility, insomnia, insufficient cervical dilatation, jet lag, labour, marital discord, menopause, mental handicap, orgasmic difficulties, overweight, procedural discomfort during bronchoscopy, upper respiratory infection, venous ulcers, vitiligo, pain, nausea, Parkinsons disease, patient involvement in adolescent diabetic care, phobia, physical activity, poor oral hygiene, Raynauds disease, schizophrenia, seasickness, secondary erectile dysfunction, smoking, stress related to dental treatment, treatment adherence, or undiagnosed ailments."
Conclusion: "We did not find that placebo interventions have important clinical effects in general. However, in certain settings placebo interventions can influence patient-reported outcomes, especially pain and nausea, though it is difficult to distinguish patient-reported effects of placebo from biased reporting. The effect on pain varied, even among trials with low risk of bias, from negligible to clinically important. Variations in the effect of placebo were partly explained by variations in how trials were conducted and how patients were informed."
This is not new information either, the abstract states "Two previous versions of this review from 2001 and 2004 found that placebo interventions in general did not have clinically important effects, but that there were possible beneficial effects on patient-reported outcomes, especially pain." Similar research has also been published outside Cochrane. At the risk of over-simplifying the issue, can we now consider the "EBM" position on the placebo effect should be, there may be a mild effect on patient-reported outcomes for pain and nausea, but any other claim is probably just hyperbole or even "woo"? Now for the icing on the cake. How many times have we heard about CFS patients being extra sensitive to the placebo effect because of the alleged psychological or psychosomatic nature of the condition? A 2005 systematic review concludes the opposite, CFS patients have a lower than normal response to placebos, possibly due to reduced expectations ( http://www.psychosomaticmedicine.org/cgi/content/full/67/2/301 ). Of course, the above is not surprising, the entire mind-body subject is plagued with exaggeration, inconsistencies, and quackery.
Angela Kennedy is correct. There is a long history of wonderful claims about the placebo effect. It seems like "everyone knows" about it too. Do these videos mean we count Ben Goldacre as a "believer"? ( http://www.badscience.net/2010/04/placebo-nocebo ). Perhaps the most relevant and updated source is a 2010 Cochrane systematic review (apparently a gold standard amongst some Bad Science forumites), which examined over 200 trials for the placebo effect in 60 clinical conditions.
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/20091554
PDF: http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003974/pdf_fs.html
"The trials investigated 60 clinical conditions: alcohol abuse, allergy, anaemia, anxiety, aphtous ulcers, asthma, attention-deficit hyperactivity disorder, bacterial infections, benign prostatic hyperplasia, blood donation reactions, breathlessness, bulimia nervosa, carpal tunnel syndrome, compulsive nail biting, dementia, depression, dermatitis, difficulty of colonoscopy, diabetes, dry eye, enuresis, epilepsy, faecal soiling, fatigue, gag reflex, herpes simplex infection, irritable bowel syndrome, hypercholesterolaemia, hyperglycaemia, hypertension, ileus, infertility, insomnia, insufficient cervical dilatation, jet lag, labour, marital discord, menopause, mental handicap, orgasmic difficulties, overweight, procedural discomfort during bronchoscopy, upper respiratory infection, venous ulcers, vitiligo, pain, nausea, Parkinsons disease, patient involvement in adolescent diabetic care, phobia, physical activity, poor oral hygiene, Raynauds disease, schizophrenia, seasickness, secondary erectile dysfunction, smoking, stress related to dental treatment, treatment adherence, or undiagnosed ailments."
Conclusion: "We did not find that placebo interventions have important clinical effects in general. However, in certain settings placebo interventions can influence patient-reported outcomes, especially pain and nausea, though it is difficult to distinguish patient-reported effects of placebo from biased reporting. The effect on pain varied, even among trials with low risk of bias, from negligible to clinically important. Variations in the effect of placebo were partly explained by variations in how trials were conducted and how patients were informed."
This is not new information either, the abstract states "Two previous versions of this review from 2001 and 2004 found that placebo interventions in general did not have clinically important effects, but that there were possible beneficial effects on patient-reported outcomes, especially pain." Similar research has also been published outside Cochrane. At the risk of over-simplifying the issue, can we now consider the "EBM" position on the placebo effect should be, there may be a mild effect on patient-reported outcomes for pain and nausea, but any other claim is probably just hyperbole or even "woo"? Now for the icing on the cake. How many times have we heard about CFS patients being extra sensitive to the placebo effect because of the alleged psychological or psychosomatic nature of the condition? A 2005 systematic review concludes the opposite, CFS patients have a lower than normal response to placebos, possibly due to reduced expectations ( http://www.psychosomaticmedicine.org/cgi/content/full/67/2/301 ). Of course, the above is not surprising, the entire mind-body subject is plagued with exaggeration, inconsistencies, and quackery.
willow
Senior Member
- Messages
- 240
- Location
- East Midlands
A couple of points which have probably already been made
1. Many here from the Uk object to the term CFS. It gives undue weight to the term fatigue and neglects a whole range of other symptoms. Personally speaking fatigue doesn't make my top 10 of disabling symptoms.
Many diseases have fatigue as a symptom. Say heart disease or MS. Is the difference that the test for the accepted tests is standardised? (With US term CFIDS the letters 'ID' signifies 'immune deficiency')
There is evidence of why i might be ill but it is dismissed by professionals. E.g. For at least 10 years I have been neutropeanic, sometimes well below the bottom of range. On occasions also basopeanic and easonopeanic. When my neuro enzymes were measured 6/8 were below range. Of these 1 was almost half the bottom of range. The professor told me this was insignificant yet research has been done into say fucosidase deficiency manifested in Alzheimers symptoms.... So perhaps not totally insignificant Others also affect vision, hearing, ambulation etc.
I have other tests that show various pathogen *activity*.
None of this is taken seriously. Is it becuase the medical diagnosis is linear, without nuance, subtelty or applied intelligence? Does it idenfiy a disease in a such a standard way that it resembles the manual referred to when my boiler breaks down? If so why?
2. No personally I don't see this as a crusade specifically against ME. We just have the bad fortune to have a condition for which there is no accepted diagnosis and with healthcare costs escalating it is easy to label us as having psych disorders for the beneift of insurers and government. But I don't see this as personal. If ME is eventually found to have an accepted organic cause, then like Parkinsons and MS before, ME will be accepted and some other poor critters will get the flack instead.
I also know of numerous cases where people with other conditions have been dismissed, neglected or treated with cruelty. As I said before I know people who have lost their lives as a direct result, who lost them sooner than they might have or have lost function as a direct result of these attitudes. It's not uncommon and I don't see that as a bonus!
BTW I have a terminally ill neighbour (cancer) in the last few days or couple of weeks of his life. Yet all this week he has been doing things I have been beyond me for 5 years or more. 2 weeks ago he was driving, something I have been unable to do for over 15years.
Editing to clarify that whilst I don't think that all BSers, medics etc are on a crusade particulalrly against ME and Dr Myhill I think the GMC is against Dr Myhill and some like her who offer PWME something different..
More to say but have to stop here.
G
Gerwyn
Guest
You are either being totally naive or totally disingenuous.It destroys her ability to provide treatments to patients with ME as intended.There is no controversy regarding her claims.She emphasised that she was expressing her opinion as Drs do all the time.
Whoever made the complaint has put the health of thousands of people at risk for his own childish gratification.I would not like to be in his shoes when his identity is revealed within 48 hours or so.All it takes is a simple court order.
There are hundreds of consultants who prescribe off label drugs for private patients yet they are not challenged.
Dr Myhill provides a website which suggests options when other conventional treatments have failed.This is called alternative medicine and fully endorsed by the Department of health.
Are Nutritionists,homoeopaths and herbalists challenged and deprived of their livelihoods.The answer is a resounding no!
Why are different standards being applied to Dr Myhill than the rest of the medical profession and other practitioners of alternative medicine.The only logical answer is that her success threatens the establishment who want to promote CBT as a treatment.
if the criteria for licence restrictions is the advocacy of unproven treatments with no scientific evidence in their support then why are Simon Wesselly and his colleagues not facing the same restrictions
G
Gerwyn
Guest
so do I for 8 doctors to agree on anything is extremly rare.to act in concert isn such a way is totally unheard of!
pollycbr125
Senior Member
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- 353
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- yorkshire
http://www.youtube.com/watch?v=YqnObcCj3hE&feature=youtu.be&a
Dr Sarah Myhills speech yesterday at the demo outside the gmc hearing
Dr Sarah Myhills speech yesterday at the demo outside the gmc hearing