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Dr MyHill's License in Jeopardy

Discussion in 'Action Alerts and Advocacy' started by Cort, Apr 9, 2010.

  1. insignificount

    insignificount

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    My friend with ME/CFS said it worked for her. I should have made that more clear. It's her life/body, not mine. Sorry.

    And it wasn't used in isolation; she's had to make a lot of lifestyle/diet changes too. She's been ill since her teens (over 20 years), but she's managed to make a partial recovery, fingers crossed, and actually achieve a few things during the last few years. I'm still sceptical (I don't know if it really worked for her or definitely think it really worked for her; I'm just taking her word for it), but not the extent of getting into an argument (not that we ever argue) about it.
  2. flex

    flex *****

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    AHH!!

    Whats in a word? As they say.

    This time the word was worked.
  3. Angela Kennedy

    Angela Kennedy *****

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    I've already discussed some problems around claims to a 'placebo effect' on previous posts here, as has biopsychobabble (who included some specific evidence as well). They were quite detailed.

    I don't think anyone has done much studies on reflexology (No placebo-arm RCTs for example!), either to test out the claims or establish a 'placebo response'. Have any placebo arm RCTs on homeopathy been done?

    IF, hypothetically, they had been done on either of these two 'treatments', the interest is in whether/how much the treatment outcome is measurably (and objectively so) effective against a 'placebo' (a pretend treatment, if you like). Placebo response does NOT mean a placebo 'effect ' has been established. Placebo arms of trials are basically controls.

    Your mental illness might have SOME physical effects/consequences for all I know. How/why is one issue (which I'm certainly not going to discuss with you or your illness in mind- for ethical reasons, and I don't know who you are or what your illness is etc.). Which actual symptoms can be safely said to be caused by the 'mind' is another problem.

    But, as I hope you understand, occasional, possibly 'psychogenic' somatic consequences cannot be safely extrapolated to the lengths they have been when psychogenic explanations for physical impairments (and claims to 'mind-body healing') are invoked. Those explanations themselves involve multiple, confused concepts around hypochondria, and malingering for example; a highly problematic belief that one can 'think oneself ill'; sometimes all of these beliefs are mixed up!; sometimes 'black boxing' occurs in the form of a claim of an 'occult' (hidden) process which actually denotes merely a lack of adequate, testable explanatory models at the level of physiology; they are HIGHLY empirically inadequate; involve circular and other fallacies of medical reasoning; including a fallacy of 'psychogenic by default' in situations of biomedical uncertainty; subjective beliefs (and prejudices) by doctors inappropriately reified; psychogenic dismissal of even obvious physiological impairment etc. etc. and some key ones I've left out. Claims to 'placebo effect' often include these problems as well.

    There are as many problems in psychogenic explanations for somatic illnesses (and the purported 'cures') as there are in the various sorts of 'woo', 'pseudoscience' or 'quackery' discussed on BS.

    Oh yeah - and (sigh) define 'happiness'.
  4. Ruth49

    Ruth49 Guest

    All support helps! The GMC are a massive institute to fight against and they will do their very best to shovel this under the carpet - not least because they have been found out by Dr Myhill to have taken patients' notes without their knowledge or consent and without making them anonymous. This is illegal. However, if the media are interested the GMC will find it much harder to keep this quiet, and the more people that are interested in Dr Myhill, the more likely the media will take note. If you're curious to see the coverage we've received so far (from the demonstration ouside the GMC) have a look at http://cid-94b8f95f20a43e47.skydrive.live.com/self.aspx/.Public/ITV News.avi

    So, anyone who can join our Facebook support group http://www.facebook.com/group.php?gid=108048875899603&ref=search&sid=100000728469172.4083097511..1 and sign our ipetition http://www.ipetitions.com/petition/witchhuntofdrsarahmyhill/ we'd be grateful to!

    Thanks, Ruth
  5. garcia

    garcia Aristocrat Extraordinaire

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    Unfortunately that is not the only thing you were mistaken about.

    If you read the transcript she did not prescribe b12 injections or anything else for that matter.

  6. I didn't say she did. I said that this (and prescription without seeing a patient) was the substance of one complaint (which it was), and was not dwelt on by the panel. She denies it. Fair enough, but that wasn't my point.
  7. Regarding asthma (someone made a point earlier - browsing from my phone just now, which makes jumping around pages more hassle than it's worth - apologies). No, she didn't say explicitly "don't use inhalers". Again, I didn't say she explicitly ruled out their use. What she does say is that they are a "lazy" option - and strongly implies that there are better ways one could be dealing with asthma. The suggestions she gives for alternatives are either not proven or, in any case, unlikely to work.
  8. Esther12

    Esther12 Senior Member

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    If this is true, then that's certainly a bad thing - I think most people here will know what it's like to be unfairly condemned as being lazy. But you need to bear in mind the level of quackery which most posters on this site will have experienced from their doctors over the years. Complaints like this one, or about Dr Myhill suggesting people use condoms over the contraceptive pill.... we're going to really struggle to understand what the fuss is about. The very idea that you can confidently trust what your doctor tells you is utterly alien to most CFS patients who have been living with all sort of contradictory or prejudicial claims about their condition for decades now.

    I fear we're looking rather more homogenous as a forum than we really are. I expect this thread will have drawn Myhill's keenest supporters, and it's also more interesting to reply to new BSers rather than re-hash old disagreements.

    I'd be interested to see what the BSers thought about the way CFS has been treated generally and it would be good for the forum to have some skeptical outsiders arround to pick apart some of the group think that we can all too easily fall into (so long as they tried to bear in mind how weird it is to be seriously disabled by a condition as porrly understood as CFS).
  9. Angela Kennedy

    Angela Kennedy *****

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    Actually, I'm not a Myhill supporter as such (that's no offence to Dr Myhill).

    I'm not a fan or supporter of any doctor (no offence doctors).

    I think there are problems in what is happening with possible adverse implications for the community. I've seen enough misrepresentation of facts by the BSers alone not to be drawn in to making any assumptions as to what Myhill has done 'wrong'.

    But that is something completeley different to what is being assumed about people taking part in any of these discussions ('Keen Myhill Supporters' etc. some of the more prejudicial descriptions over on BS)

    It's actually NOT 'more interesting' to reply to BSers on this thread, certainly not as far as I'm concerned. It's having to correct misinterpretations or problematic assumptions all over again, explain oneself all over again - defend oneself and the community against egregious canards of same etc. etc. know it is likely to be 'reported' over at BS and misrepresented by the same old ad hominem comments blah blah blah. Not interesting at all - in fact it's tedious. I still think it's needed, but it's tedious.
  10. Esther12

    Esther12 Senior Member

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    I'm the same. But I still expect that this thread is likely to draw forum members who are disproportionately keen on Myhill.

    On replying to BSers being more interesting than re-treading old disagreements, I was talking for myself.
  11. flex

    flex *****

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    Ah, its all coming out now.

    Charged with nothing, dubious accusations, false accusations, twisted accusations and the BS guys saying " well I never said this or I never said that" and "sorry you were right on that matter" and "well if you read in such a way 17 times removed to the power of 48 it could be seen to maybe say, possibly, if you weren't so sure and had the wrong reading glasses on, perhaps Bla bla bla.

    And all this is the actual case brought against her. I will be very surprised if Myhill doesnt take the GMC to the cleaners!!!

    Even the GMC could only muster up a bunch of may have this and may have that.

    A lawyer is going to have a field day with this.
  12. Min

    Min Senior Member

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    My sincere apologies to jace for mistakenly suggesting he or she is a troll.
  13. Gerwyn

    Gerwyn Guest

    i wonder if there is such a thing as mental illness or are we talking about disorders of the brain.Last time I looked the limbic system was part of the brain.The brain after all(particularily the right hemisphere) controls the body.when i was at my very worst i was seenby(very honest)psychiatrists.They told me that they had never seen anyone like me.They then added "its amazing what the mind can do".When I asked what they meant and how "the mind" acomplished such things.They could not tell me because they admitted they did not know! Any autonomic disturbance can cause somatic symptoms but that simple scientific explanation seems beyond them.According to disciples of CBT the neuroscience of the right hemisphere does not exist.The processes of the right hemisphere are not amenable to concious investigation because of the kinds of processing involved and the neurotransmitters used.What do psychiatrists resort to in trying to understand these processes-Somatisation.The sheer ignorance makes me want to weep!The fact that they take themselves so seriously makes me want to laugh out loud
  14. garcia

    garcia Aristocrat Extraordinaire

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    I think you are being slightly disingenuous here (deliberately or not). It is not that this complaint (one of two) wasn't dwelt on by the panel. It is that the accusation was false and Dr Myhill managed to rebut it without response.

    "Was not dwelt on" implies it was true and they moved on out of the goodness of their hearts.
  15. Robin

    Robin Guest

    Good lord. YES. YOU. DID.

    I was the one who responded about asthma. Let's review!

    YOU said:

    I linked to where she insists they do use them in the event of an asthma attack.

    So...now you've actually checked the source material (good job!) and are changing your tune. She does say that using inhalers is lazy, and I agree, that is wrong. However, most of her advice is pretty mainstream, ie identify and avoid triggers (smoke, irritants, allergens, viral infections), some of it is weird and unsubstantiated (gut fermentation, diet, posture, salt pipe.) None if it is potentially lethal because she makes it clear that inhalers and professional help are a priority in an emergency.

    Making alarmist claims and then lying about it later? I'm still unclear about your goal here at PR, but if you sincerely want to point out some of the problems with Myhill's website and perhaps have a discussion about alternative medicine, you should at least review the material before you dive in again.
  16. Mark

    Mark Acting CEO

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    I'm not sure whether you have said this or not insignificount, or whether you have said that you have not said it. I am also not sure what you have said that I have said lately, and I have to be concerned at how you're representing my views elsewhere, since you seem to have completely misunderstood them in the quote you showed earlier, but since the point may spin on the definition of 'conspiracy' it is possible you have honestly misunderstood.

    Anyway I'm not sure whether you'll have difficulty relating to me, who is not convinced that a conspiracy exists where there is none, I am not aware of any such person on the forum either so you should be OK, although there are inevitably many different slants here on how we view what has been going on behind the scenes, because of course none of us really know all the answers about that.

    But to be clear again: there are no conspiracy theories here. Anyone looking for conspiracy theories is advised to look elsewhere. Here are people with ME/CFS of all shades and all backgrounds, sharing their experiences and communicating them to the world. There is much common ground for anyone who has experienced this condition directly, and in these areas we do perhaps speak with a loud chorus of certainty, simply because we are speaking our truth, together.

    Others have done what you did not, however, and called us all conspiracy theorists: I have seen one blog that is rather scary in its combination of utterly selective quoting and msrepresentation of "the forum", "PR", (again as if we had a kind of group mind, and using offensive terminology to describe us all as conspiracy theory nutters, etc etc etc). It's quite breathtaking in its clearly deliberate misrepresentation of individuals and groups, and its framing of what is "the issue", it's an extraordinary amateur attempt at 100% dishonest propaganda.

    The good news is: this doesn't wash in the slightest with anyone who looks at the evidence, for the neutral will quickly see that indeed many of us are mad, but will quickly determine that we are mad as in "hopping mad" rather than as in "a bit mad", but also if they look they will certainly then also see that we are real, and we share our stories with calm and rational integrity and honesty, and we have something important to say. Anyone can see that, who looks. And anyone who looks at the nasty blogs ridiculing and insulting us and reframing the argument may be taken in by the spin, but only if they never look anywhere else - and even then, even then, in the midst of that retelling of us, some small slivers of our reality still escape into more public view, even they do actually get a few little bits right! So even the vilest of the filth that spews out, is just part of the process, and it will be seen for what it is by reasonable people.
  17. Mark

    Mark Acting CEO

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    I think it's quite obvious that I'm being lenient in giving you the benefit of the doubt insignificount, given that you have admitted that you have already been suspended by another moderator and have re-registered. I'm giving you the benefit of the doubt for now, in view of the following:

    There have been a lot of new members here lately who have caused widespread offense and prompted numerous complaints and provoked arguments which are not in the spirit of this forum, and dealing with all that has been difficult for a small team, and the evidence of your specific offence appears to no longer be available, almost certainly having been deleted as offensive to Gerwyn given that you admit to being at least "slightly antagonistic". (I am currently reviewing processes in this area but i have been busy as you know).

    My understanding is that you and others from the Bad Science forum caused offence to many members in various ways, mostly in the aggressive tone some people adopted and the offensive language used; I did see numerous examples of that which have now mostly been tidied up and removed by the hard working and long suffering moderators. The behaviour overall was in my view rightly considered trolling and several (but not all) of the new members were banned for their behaviour. I illustrated in one post earlier in this thread how the rules were being repeatedly broken. Your antagonism seems to have been considered to be part of that.

    However there have been a small groupof people out of those accused of trolling who have expressed with apparent great sincerity that they are genuinely interested in learning about ME/CFS and know very little about it, and of course we would all like to encourage greater understanding of this condition. There is, of course, a great deal of excellent information available, elsewhere on the internet and of course especially on Phoenix Rising, and members will I'm sure be able to direct you to some information to get such people started. I myself will add more links and reply to your other posts as and when I have time. I have read your posts with interest and continue to suspect you may not actually be insignificant after all.

    Thank you for the link. I am still not sure if it is available direct from the GMC, or whether the details of the allegations were available before the trial, but anyway, this is now available on Dr Myhill's site:
    http://www.drmyhill.co.uk/wiki/The_Full_Transcript_of_Dr_Sarah_Myhill%27s_IOP_Hearing

    All about the GMC hearing here:
    http://www.drmyhill.co.uk/wiki/Category:My_GMC_Hearing

    And on BBC Wales, watch the testimony of Patricia Chell, just another victim of Dr Myhill's 'dangerous treatments', here:
    http://news.bbc.co.uk/1/hi/wales/mid/8650048.stm
  18. Supporters of Dr Myhill

    Supporters of Dr Myhill Guest

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    Hi all,

    First of all I would like to pass on a BIG thank you to all those who have supported Sarah.

    Whilst the initial skirmish was lost, your letters of support , petiton comments and other communications to the GMC will prove very useful in the days and weeks ahead.

    Obviously the fight is not over. There are very many avenues open for an appeal (and more) against the GMC.

    For obvious reasons, I cannot say any more right now but be assured that a lot of work is now going on 'behind the scenes'.

    As for now, the supporters can rest a while.

    As and when new details can be released, PR will be the first to know. Many of our new ideas have come from this fabulous site along with some of the best letters of support.

    Thank you once again.


    x
  19. Nina

    Nina Senior Member

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    Thank YOU for doing all you do and for keeping us updated!!!

    The 2 armies will continue to lend their support until we have achieved our goal.
  20. Mark

    Mark Acting CEO

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    "...but the person who has nothing, even the little he has will be taken away from him"
    (Luke 19.26)

    A few facts by way of a personal summary of the case so far...

    Dr Sarah Myhill is one of the few doctors who has the compassion and expertise to treat the medical condition of ME/CFS in the UK. She is much loved by the many patients she has successfully treated and who have benefitted from the advice on her website - but not by the medical establishment, who fail to understand her modern environmental medicine approach in which she is widely recognised as a pioneering figure.

    Dr Myhill has been reported to the GMC 6 times before - every time by doctors and never by patients - no allegation was ever sufficient to be considered a case of misconduct, and Dr Myhill was cleared of all those allegations in 2007.

    The latest allegation against Dr Sarah Myhill was raised via an anonymous web complaint by "Jonas" (believed to be a US citizen) from an internet forum called "Bad Science". Jonas criticised the information on Dr Myhill's website, and described Dr Myhill as an "uberquack". The ensuing discussion of treatment recommendations on Dr Myhill's website took an extremely offensive tone and caused enormous offence to many ME/CFS sufferers who, along with Dr Myhill, were repeatedly described in foul and abusive language by multiple members of the Bad Science forum. Many vicious and unfounded allegations were made during the course of this discussion, across multiple threads, and much of what was said, some of it later removed, was likely defamatory. The Bad Science forum is run by Ben Goldacre, who appears to have made no effort to control the discussion.

    No evidence has been produced at any stage indicating any patient dissatisfaction with Dr Myhill, and in fact her former patients, including huge numbers of ME/CFS patients from around the world, have vigorously rallied to her side. Despite the alleged risk of the treatments recommended by Dr Myhill, no evidence of any negative patient outcomes has been advanced at any point, nor even suggested.

    The GMC explained in its decision that it had not determined whether the latest allegations were true or not, but only whether they might represent a case of misconduct. This new procedure of the GMC's effectively means they can attack any doctor they wish, on the basis of anonymous allegations which may be completely unfounded, and the GMC does not even have to determine whether the allegations are true. In delivering their punishment they effectively decided that Dr Myhill was guilty until proven innocent.

    Without determining the truth of the allegations, the GMC summarily suspended Dr Myhill's license to prescribe prescription-only medication, and instructed her to remove information on her website relating to cardiology, chest pain due to ischaemic heart disease, acute coronary syndrome, heart failure or pulmonary embolus, asthma, breast cancer, hormonal contraceptive medication, vascular disease, immunisation or vaccination.

    These restrictions mean that Dr Myhill no longer has the right to freedom of clinical opinion, her ability to practice good and effective medicine is curtailed, and she is effectively banned from medical employment other than self employment.

    The "dangerous treatments" Dr Myhill is alleged to advocate are detailed on her website, and she has been instructed to remove this advice. The information will of course remain mirrored on the internet, and this inevitable fact is outside the control of both Dr Myhill and the GMC. There has been no suggestion that it is illegal to publish this information, only that the GMC will not allow Dr Myhill to say these things.

    It is allegedly typical of GMC investigations "that they have taken patients' private and confidential medical notes often without patients' knowledge, often without permission, without offering them their legal right to object and without anonymising their notes". Is this the next abuse the ME/CFS patient community has to face?

    One of many scandals lying beneath the surface of this case is the fact that the tests, treatments and advice offered by Dr Myhill and others for ME/CFS are still not even considered for provision under the NHS. The huge amount of information now known about this condition is - in the UK - still unknown by doctors and dismissed by psychologists, apparently because the underlying research covers newer areas of medicine that lie outside the training and experience of both of GPs and of established researchers in the psychology-dominated field, but in reality political factors are hugely significant in understanding this highly conservative approach. ME/CFS is not treated medically in the UK at present, so it is (quite wrongly) perceived that any state-funded treatment would represent a new financial burden, and the powerful vested interests of those who control ME/CFS research and treatment as if it were a psychological condition continue to block any and all efforts both to research and to treat the condition medically.

    And against all this background, we are invited to believe that the GMC simply happened to bring this case against the only practicing ME/CFS doctor in the UK, in response to this anonymous complaint, and just happened to hold the hearing on the Friday before the General Election, announcing the decision just too late to make the evening's news copy, and imposed a draconian order without reference to the truth of the evidence presented.

    Assuming all this does not amount to a conscious and organised attack on environmental medicine and on ME/CFS patients and on any treatment that shows any prospect of successfully treating their condition as a physical rather than as a psychological illness, then it is at the very least a disorganised and spiteful one. ME/CFS patients and their advocates continue to feel relentlessly persecuted by a medical system that not only does not understand us, but does not appear to have the slightest interest in finding out about us, but we will continue to do our best to defend ourselves from these continued attacks and we will continue to fight for our right to access to medical treatment for our medical condition.

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