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Dr Myhill, Bad Science, and Scepticism

Discussion in 'Action Alerts and Advocacy' started by Mark, Dec 4, 2010.

  1. Mark

    Mark Acting CEO

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    - Mark: This thread is spun off from the thread "Very Important News regarding Dr Myhill and the GMC":
    http://forums.phoenixrising.me/inde...nt-news-regarding-dr-myhill-and-the-gmc.6355/





    The weather in the UK is atrocious, the whole country is snowed in, so that is probably the reason.

    It really is a shameful business though, you're not wrong there leela.

    I'd like at some point to post a full analysis of the 2nd IOP here, if I can manage the time to do so - I think it would be quite shocking for forum members to see, and it doesn't bode well that they managed to reach the conclusions that they did, based on the evidence in that transcript.

    I'll have to do quite a bit of work to pull out all the precise details, so what follows is from memory and some details may not be precise, but this is the gist of the 2nd IOP transcript as I recall it, followed by some further comments on the history of the case.

    The meat of the IOP hearing was in the reports from 4 expert witnesses selected by the GMC to comment regarding the allegations. The first report, regarding internet commentary, basically said that whatever a GP says on her website isn't really grounds for misconduct or whatever, it's like writing a book or similar and I think he noted that precedent is quite lenient in that regard. The tenor of the quotes from that report, even as cited by 'prosecution', came across to me that whatever she said on the website wasn't really grounds for suspension. Many months then passed...and then in the 10 days before the hearing, 3 more expert reports suddenly landed on Dr Myhill, one of them just hours before the hearing. All of them concerned details of claims made on Dr Myhill's website, from experts in the relevant fields.

    The 3 further expert witnesses were all asked something like "does this comment, in your view, fall short of the minimum standards required of a GP?" The question asked was basically the charge against her, so in legal terms it's essentially a leading question - but the GMC's procedures seem to allow them to run a coach and horses through every legal principle going so that sort of thing won't be addressed by the High Court (which will address any breaches of the GMC's own procedures) - maybe the European Court of Human Rights might be another matter however, if it comes to that, which it could do since there was no right to anything resembling a fair trial here.

    The first expert report had basically said that what a GP writes on her website has little relevance to the standards required in relation to a GP actually practicing, so that the whole premise of the leading question asked of the experts was seriously flawed according to the GMC's own expert report - but doubtless the 2nd group of experts weren't alerted to that point.

    The 3 reports were each concerning areas of detail where comments on Dr Myhill's website were at variance with NICE guidelines. Dr Myhill had scant opportunity to present the scientific evidence those comments were based on, at such short notice, but in the limited time available she did a pretty good job I thought. The ones that jumped out as most notable to me were the evidence regarding the contraceptive pill and the evidence regarding mammograms.

    In relation to the pill, which Dr Myhill does not recommend, she claimed that the pill was linked to 4 kinds of cancer. The expert asked to comment said that it is only linked to two of them and she was aware of no evidence for links to the other two cancers. In her view, this "fell well below the standard required...".

    At this point I fell off my chair. The appalling crime committed here was to advise against the use of the pill on the basis that it was linked to 4 types of cancer, whereas the expert complained that according to accepted evidence the pill was only linked to two of them! I wondered whether this detail would make any difference to the recommendation to avoid the pill. But worse was to come...

    The expert also raved about how women need reliable advice regarding contraception - almost as if they didn't have ample access to the NICE advice through other sources. Dr Myhill's refutation cited research that had suggested a link to the other two cancers, and described a private conversation with the researchers on that issue who had told her that it might be very hard to establish a link for technical reasons as the effect was masked by confounding factors and it would take decades to prove one way or the other, but that it was likely true.

    I fell off my chair again.

    In relation to mammograms, Dr Myhill was concerned about the impact of the x-rays and recommended a new non-invasive screening technique available via a private company. This expert report also got angry about the importance of reliable screening, warned about the private costs of this weird new non-invasive screening that patients would be subjected to (about which she knew essentially nothing), and insinuated (without evidence) that Dr Myhill might be profiting from referring patients there (a common and unfounded insinuation/fear that runs throughout this case and plays well to the fears of the NHS people involved). Dr Myhill explained a bit about the non-invasive technique and the history of controversy over mammography, and then (this bit really got me) pointed out that the expert themself was a consultant at a private mammography clinic, thus demonstrating that the expert actually had far more of a conflict of interest than Dr Myhill in this matter!

    There was a great deal more detail than what I have sketched above, but these were the biggest things that stayed in my mind; I think they are illustrative of the rest of the arguments. Dr Myhill defended herself well - given the limited time she had to prepare her case - in relation to the allegations discussed, citing scientific evidence on which her assertions were based and explaining her perspective quite reasonably. But the first expert report, about the status of internet comments by doctors, should have made this unnecessary anyway.

    There was then the question mark over telephone consultations, which was the other half of the case, but this wasn't explored in any depth. Suffice to say that everyone on this board will understand that Dr Myhill's procedures in this matter are geared around the unique situation of ME/CFS patients, and that her very detailed questionnaire and the other measures she takes to consider patient history in this matter are perfectly reasonable and very considerate - they are of course based on patient circumstances, in particular based on the situation of people with ME/CFS.

    There were a couple of other issues.

    There was concern, I'm sure, that Dr Myhill had criticised the GMC, and doubtless they saw her public comments about the GMC and their behaviour in a very dim light - nobody likes to be told they're an idiot, especially idiots, and the GMC had managed to lose some records relating to having been through all this stuff many times before, hence the accusation of the GMC as a body suffering from 'alzheimer's disease', which probably didn't go down well - but a hell of a lot worse could easily be said about the GMC, and fairly.

    Dr Myhill's challenges of legal points didn't seem to hit the mark at all, she's not a lawyer after all, and didn't have one present due to GMC's previous persecution of her making insurance a problem. But I was not about to wade through legal documents to determine the rights and wrongs of the points she raised so I can't comment on them.

    There were also allegations that Dr Myhill had breached the terms of the first interim order by failing to notify a health trust of her interim order status, in response to which she explained exactly how this administrative oversight easily arose and apologised for it. This only served to highlight how draconian that requirement was and how administratively difficult it must have been to comply with: imagine having an obligation to write to every health professional or body with whom you have a direct or indirect relationship to tell them that the GMC have told you you can't prescribe medication for the next 18 months, and imagine too the impact on your professional reputation that can be imposed by such an interim measure, without any kind of fair hearing being required to impose it. And ponder the vindictiveness of that requirement that you must alert all these health professionals to the restrictions with which you are complying.

    And so the panel retired and reached its verdict to suspend her completely, giving a list of completely vague reasons about their concerns and suspicions that seemed to have nothing to do with the allegations directly. The list is quite interesting in that pretty much all the points seem to apply rather well as criticisms of the NHS's treatment of ME/CFS.

    And the Bad Science mob threw a big party and laughed and laughed, and celebrated "the afterglow", as if the whole business were some kind of cool new internet game to play during lunch breaks, without consequence for real people. No sympathy was expressed at this party for the feelings of Dr Myhill, nor for her patients and supporters, who the BSers seem to think are all mad and unhinged and thus suitable objects of ridicule, and who they nevertheless claim to be protecting, whilst showing not a trace of compassion for them.

    Some analysis of the choice of the phrase "afterglow" for this celebration seems to me quite illuminating. Given the insult of choice of the BS crowd, which they used frequently and casually to describe Dr Myhill - a sexist swear word which I will not repeat here - and given that Dr Myhill, and a disproportionate number of ME/CFS patients, are women, whereas the majority of the BS members appear to be grown men behaving like adolescent boys, given all these factors the metaphors can easily be extended to describe the BS members themselves, and what they have done, but, again, that kind of language is not welcome here.

    The behaviour and language of the BSers throughout the whole of this prelude was quite atrocious and gave a very good insight into the nature of such quackbusters, prompting a strong rebuke from Ben Goldacre, which I might also quote here later because he said some very good and principled things in that statement which deserve praise even if they were only aimed at covering his own back, despite still feeling that 'good work' (which I missed) had been done on the thread. It seemed clear that Mr Goldacre was shocked and dismayed by some of the things that had happened on his forum, which makes it a shame that he didn't pay any attention to it until the case had been concluded.

    As some members of this forum are all too well aware, several very aggressive clashes occurred between members of various ME/CFS forums and members of the BS forum, both on the BS forum and also on this one. The trolling by BS members on this site came at a very sensitive time for our community, and from my perspective I can say confidently that this was a significant contributing factor fuelling the divisions which arose here around that time. Many former members felt that the PR moderation team were too tolerant of the BS trolling, and I have to say, in retrospect I think they were right about that. We wanted, as we always do, to allow a wide diversity of viewpoints to meet here and discuss ME/CFS issues, but I think we were naive about the difference in culture of the BS crowd, who don't seem to be accustomed to expressing themselves with the same levels of respect and tolerance we value here.

    I will take this opportunity then to apologise personally and on behalf of PR for our failure to adequately protect members from abuse during that time. There's no question that a great deal of hurt and stress was caused to patients and their advocates during that episode, though it all seemed like jolly good fun to the BSers.

    There were numerous spin-off issues raised along the way: various people thought legal action might be warranted about what was said on the giant BS thread about the issue and elsewhere; some campaigners (myself included) used the evidence on the BS thread very successfully to gain sympathy for our cause; and the thread itself seemed to be shaping up very nicely as an expose of the dynamics on the front-line of a war between self-styled 'quackbusters' and their victims.

    Then the giant thread where the whole thing had taken place was conveniently lost by a BS admin, who explained that the site explicitly instructs all search engines not to index the site so it hasn't been archived, and that the backups had been overwritten, so the thread is lost for ever - but please note that if you point out this was 'convenient' and take an open mind on whether that destruction of evidence may have been deliberate, that makes you a conspiracy theorist, and note also that all members of the BS forum are agreed that the loss of the thread was definitely, obviously, clearly not deliberate (indeed it's quite hilarious to suggest such a thing), this being a good example of one of the few types of belief that should be held by all people without any need for evidence, because it's just obvious.

    And doubtless more of this BS will go on, much in the same vein, and all assertions will be challenged with "evidence or stfu", including in cases where they themselves have destroyed the evidence. And doubtless they will continue to fervently agree with each other that other forums like ours that host wider ranges of opinion than their own are "echo chambers", without any hint of irony or self-awareness. And doubtless few if any of them will pause for thought and seriously wonder whether what they have done is a good thing, or a fair thing, since after all, they were just "having fun".

    And Dr Myhill will, I am sure, battle on, as she always has, providing care and effective, evidence-based treatment, in whatever way she is able, to British ME/CFS patients whose needs the NHS so callously and systematically ignores.

    And just as she stands by us, we patients in turn will continue to stand by her, and we will support her struggle for justice, for herself and for us, in any way we can.
  2. Kina

    Kina Moderation Team Lead

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    Mark -- you said "I'll have to do quite a bit of work to pull out all the precise details, so what follows is from memory and some details may not be precise, but this is the gist of the 2nd IOP transcript as I recall it, followed by some further comments on the history of the case." I think your recollection is faulty in some instances, I have a copy of the 2nd transcript and you are not remembering some things correctly or are putting your own spin on things -- I am not making any statements here about the decision of the GMC. You are also misrepresenting the Bad Science forum -- yes there are some silly childish people there, but there seem to be many nice mature people from what I have read on the forum who seem interested in discussing pseudoscience. If there are a few childish people here, does that make the whole forum a bad place -- no I don't think so. I don't think a whole forum deserves to be insulted in such a manner just because of a few bad eggs.
  3. Mark

    Mark Acting CEO

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    You make a fair point kjm. There are some reasonable people on the Bad Science forum, and there are a lot of things said on there that I agree with. In fact I spent some time the other day looking at a range of other threads, on a range of other subjects, and got a sense of the general political attitude, and I was surprised to find that there was a great deal on other threads with which I agreed, particularly regarding politics. I suppose as a former Guardian reader myself (I boycott it nowadays because of the health coverage), that shouldn't have surprised me.

    What I consistently didn't like was the way people behaved towards ideas and people with whom they disagreed. Surprisingly, what I saw was far more abuse and hysteria than calm, reasoned argument based on the facts. I was very surprised to see a lot of very unscientific behaviour, based on prejudice, and highly selective use of evidence. It seems to me that people on Bad Science can be very quick to make up their minds that somebody or something is simply wrong, and a quack, and then to pursue that target as a pack - ruthlessly, rudely, unfairly, and without making any attempt to see the other person's point of view.

    If I have misrepresented the Bad Science forum members by tarring everyone with the same brush, then it's at least equally true that descriptions and references to Phoenix Rising on Bad Science have also mostly spoken in generalisations, and have completely misrepresented what this forum is about and what its members are like. Whereas intense scrutiny was applied to Dr Myhill's website, no such scrutiny ever seems to be applied to posts unfairly criticising people or organisations who Bad Science members see as enemies.

    There is a recent thread on Bad Science about this forum, which cites a link to a wordpress blog purporting to be an investigation and expose of this site and of Cort Johnson. That wordpress blog contains nothing but innuendo and nonsense, there's not a single thing on it that is fair or balanced, and not a single valid criticism. It was created, almost certainly, by disgruntled activists from a fringe ME/CFS group. It's not the first time I've seen extremist ME/CFS activists, some of whom are too extreme and dogmatic to find a place on our very broad and tolerant forum, cited and used to attack moderate ME/CFS doctors and groups - without any critique or investigation of what are quite obviously unfounded and possibly libelous accusations.

    Maybe all this behaviour is just reserved for ME/CFS. That's all I've really looked at in depth. But on the threads that touch on ME/CFS, even the most reasonable of posters are sadly so ignorant of the reality of the condition that there's still virtually nothing on those threads that I can find to agree with - other than the posts of ME/CFS patients who 'troll' there and are regularly ridiculed. There are one or two ME/CFS patients who are decent and reasonable people who I personally think are just misguided and misled, and I feel very concerned for them as they embark on the journey of NHS CBT/GET, a path which so many of us have trod to our cost. I'm very sorry that such people have been put off by extremists, but they should recognise that those extremists are extreme because they have been treated so badly, and they should ask themselves: by whom?

    That's what I see, I'm afraid to say, and I wish it were otherwise. Many of us have hoped that there ought to be a great deal of common ground between Phoenix Rising and Bad Science. Both forums support good science and we too pursue quackery when we see it. If the Lightning Process, CBT/GET and the Wessely school were as rigorously explored and exposed on Bad Science, then perhaps I'd see some more balance and I wouldn't be so upset at the targeting of Dr Myhill.

    But I don't see an even-handed approach: I don't see the same level of scrutiny applied to government-supported, mainstream science that is applied automatically and vigorously to anything that is unusual, unconventional or novel. And that's a huge and systematic problem. If you are going to automatically smack down anything new that you don't understand and you suspect is 'dodgy', and then also assume that those victims are somehow evil people, and deserving to be treated with contempt, allowing free reign to your baser instincts, then you will inevitably unfairly and viciously attack a lot of good people who may simply be misguided, or who may simply have a different perspective - or who may, indeed, actually be right.

    It's not enough - and a disastrous assumption - to assume that the good science will win out in the end and the battle will be played out and may the best man win. When a large and powerful force gangs up on a small and unconventional group without the resources to defend itself, then no matter how good the science is, if the defender of it crumbles under the strain their insights will be lost. And that can be - and is - a massive block to scientific progress.

    Bad Science seems to be predicated on a negative: the idea that there are bad things out there which need to be aggressively attacked and exposed. With that approach comes a massive responsibility to be right, and to be fair, and to give every opportunity for the target to explain and justify themselves before you attack them and pursue them in a way which can shatter the lives and careers of perfectly decent people. I don't see any sign of that sense of responsibility on the Bad Science forum, save for a very few lone voices. What I see is people running amok and treating the whole thing as a big joke, ridiculing anything that looks a bit odd. Not everyone, I grant you, but the vast majority of the content I've seen is like that.

    One phrase that keeps popping into my head comes from Bob Dylan: Don't criticise what you don't understand. Unless you have made an effort to understand something - an honest, fair, even-handed effort - then you should not wage war on it based on your prejudice. If I am to any extent guilty of that myself - and actually I think I have tried quite hard to understand Bad Science, and I think I do understand it - then it is most emphatically a response to having seen my doctor, my community and my friends treated with utter contempt. I will continue to stand up for them whenever I see that happening.

    I haven't seen a "few bad eggs". I've seen a few good ones. I am prepared to believe that most people on BS believe in what they are doing, but they don't take their responsibility to be fair seriously enough, and I think the whole enterprise is extremely dangerous, misguided and intolerant.

    Bad Science is predicated on the idea of attacking people. When it does so, it should not be surprised to be attacked back.
  4. Kina

    Kina Moderation Team Lead

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    Mark -- you seem obsessed with putting down Bad Science. It's just a forum and it attracts skeptics so it's going to have a different face than this forum. I have seen some pretty poor behaviour on this forum -- eg posters being called "idiots", posters being put down for different things. So every forum has a negative side. I think it's just personal for you because of the Myhill thread that was on Bad Science -- you support Dr Myhill, they had a different view than you, they questioned her practice etc, etc, etc. I believe the worst poster got banned for life from that forum.

    You said "Bad Science seems to be predicated on a negative: the idea that there are bad things out there which need to be aggressively attacked and exposed. With that approach comes a massive responsibility to be right, and to be fair, and to give every opportunity for the target to explain and justify themselves before you attack them and pursue them in a way which can shatter the lives and careers of perfectly decent people. I don't see any sign of that sense of responsibility on the Bad Science forum, save for a very few lone voices. What I see is people running amok and treating the whole thing as a big joke, ridiculing anything that looks a bit odd. Not everyone, I grant you, but the vast majority of the content I've seen is like that."

    You are in error here -- the site is about "bad science" or pseudoscience and people post what they think is pseudoscience and most of it is definitely bad science. The idea that things need to be aggressively attacked or exposed, is your view only -- when somebody posts an article on something that seems dodgy -- people respond in many different ways -- no proof, could be true, might be true, etc etc. It's a board for sceptics, sceptics discuss pseudoscience. You seem to be focussed on Dr Myhill here -- on most posts names don't come up, just the material being questioned -- by the way, the forum did not shatter Dr Myhill's life, the GMC did that -- it just so happened that the lab techie jonas complained about her website and it was obvious by his post that he didn't expect them to pay attention to his complaint -- it's illogical to blame a forum for wrecking somebody's life just because a member complained. What if Jonas had belonged to this forum instead of Bad Science -- he would have been met with derision, chastised, scolded for reporting his concerns about the website. Anything that was was posted on threads on BS about Dr Myhill was after the fact and had nothing to do with the GMC's decision. People have even gone as far as blamed Ben Goldacre for the thread, in the beginning people even named Ben Goldacre as jonas. All internet innuendo driven by personal bias and ignorance.

    "Don't criticise what you don't understand. Unless you have made an effort to understand something - an honest, fair, even-handed effort - then you should not wage war on it based on your prejudice." Absolutely, but honestly Mark, all I read is you waging a war against Bad Science based on prejudice and even some hatred. It's obvious in your post about the second IOP hearing -- the IOP had nothing to do with Bad Science itself, they did deal with complaints that came from people, one who happens to belong to that forum -- in your post, not only did you mis-remember some of the things that went on at the IOP, you launched into yet another rant about Bad Science. I guess I just don't get the point. The IOP transcript is actually quite interesting and revealing -- but it has nothing to do with Bad Science.
  5. Mark

    Mark Acting CEO

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    It's quite true that it has become a very strong interest of mine, in the course of the last year, to explore and draw attention to the activities of Bad Science in relation to Dr Myhill. Call it an obsession if you like; I would say I am strongly motivated and committed to drawing attention to some of the more unsavoury activities of the skeptic community.

    Bad Science does indeed have a very different face to this forum - the face of frankenstein's monster, indeed! - and if you expect me to ignore it you'll be disappointed, because Bad Science has set itself up in direct opposition to the interests of UK ME/CFS patients and to Dr Myhill in particular. We have very different interests, indeed.

    There is absolutely no comparison whatsoever between the two forums as regards such behaviour, and you know that perfectly well. On BS, it is a matter of course and is permitted. On PR, it is forbidden by the rules, and members are required to treat each other with respect.

    If you think that calling other posters "idiots" is poor behaviour, you are right. You will not feel comfortable on the Bad Science forum, then, where one of the moderators has recently explained that the new and stricter regime established as a result of the appalling behaviour on the Myhill thread will not go so far as to stop people being allowed to call other posters "dickheads". The justification given for this is that some people are "dickheads" and you should be allowed to tell them so. So much for science and rationalism: the first resort for BS members in an argument seems to be bad language and personal abuse. It's one of the defining characteristics of the modern skeptical movement, from what I can see, and gives the lie to any idea that this is a balanced and objective movement that reasons based on evidence and free from bias and prejudice.

    One would have to look hard to find any similar examples of personal attacks here: they are very rare, and they are not condoned by the moderators. I see from your post history that you have sought out some contentious threads, so that will inevitably give you a better chance of finding such behaviour. But we always make it clear that this is not acceptable behaviour here, and persistently calling people "idiots" results in a ban. Fortunately, this happens rarely.


    You are quite right, it is personal for me. I have been sick for 15 years, and the only doctor who has significantly addressed my illness is an associate of Dr Myhill's. The advice on her website has been invaluable to me, and has been instrumental in helping me to understand and manage my condition; I have recovered a great deal of functionality thanks to her. She has helped thousands of ME/CFS patients similarly, hence the thousands of letters of support submitted by former patients to the GMC.

    From what I've read you are right that one poster who joined BS to post on the Myhill thread was banned from BS after making a particularly sickening comment about Dr Myhill.

    (ETA: kjm has clarified that this comment was not made about Dr Myhill, but about one of her supporters. My apologies.)

    Unfortunately, I know what was said because that comment was cited by Mr Goldacre in his rebuke to the forum, in an attempt to explain to members what constitutes unacceptable behaviour, and the comment has since been cited again by a moderator as an example of the sort of thing that can't be said any more. Note that our policy here is not to repeat such abuse when it occurs.


    I don't think I'm in error here at all. The very concept of a site dedicated to skepticism is to seek out and attack "bad science" or "pseudoscience". That is in itself an aggressive stance, based on looking for such things and exposing them. The fact that people discuss alleged pseudoscience and don't always agree that everything posted is pseudoscience is irrelevant. That which the group identifies as "pseudoscience" will inevitably be aggressively attacked in any way possible.

    The point I'm trying to make to you is that if you are going to do that, you have a huge responsibility to take the process seriously; to avoid "false positives"; to pay close attention to your own prejudices, biases and assumptions; to give your 'victims' ample opportunity to explain their side of the story; to behave in a sensitive and decent fashion; and to apply your skepticism equally to all sides. If a skeptical site were to do that honestly, I really don't think I would have a problem with it.

    This is a completely dishonest argument which has been repeated frequently on BS. It is not good enough to abdicate responsibility for the consequences of your actions and lay the blame solely at the door of the GMC. That's just like shouting "fire" and running away: cowardly behaviour. It's just the sort of irresponsibility I'm talking about.

    It's also inaccurate.

    The report to the GMC regarding Dr Myhill was conceived and launched from BS, arising from earlier discussions of Dr Myhill on BS. Examples of advice varying from NICE guidelines were found by BS members trawling Dr Myhill's extensive site looking for evidence to be cited. Evidence was presented to the GMC throughout the period after the initial complaint was registered, while BS members continued to trawl the website. GMC practice allows such evidence to be gathered throughout that period and presented right up to the last minute before the hearing, giving no time to prepare a defence. The details of the criticisms of the website presented to the GMC were largely if not entirely the same criticisms as were posted on the BS Myhill thread - and whoever collated that information very probably did so with some reference to that thread.

    So it's really very hard to imagine that the evidence considered at the hearing was not at least significantly informed by the analysis posted on BS. To say that the material posted on the BS site had nothing to do with the GMC's decision, is simply an abdication of responsibility.

    As regards the "lab techie jonas", as you probably know he's been identified as Dr Stuart Jones, a senior clinical scientist at Queen's Hospital in Romford, Essex. Coincidentally, perhaps, that hospital is already well known to the ME/CFS community as the home of Prof Findley, medical adviser to the "ME charity" AfME, and notorious for his unit's treatment of ME patients as described in post #15 here:
    http://forums.aboutmecfs.org/showthread.php?8122

    And it's not really surprising or unreasonable that some people blamed Ben Goldacre for the thread, since it is his forum, which he set up - and setting up such a site, winding it up, and letting it go, without proper oversight, is yet another example of irresponsible behaviour. Mr Goldacre quite rightly made a very strong statement condemning the behaviour that took place on the Myhill thread, so one has to wonder, given the graphic that adorns the top of the Bad Science website, whether he now feels himself in the role of Dr Frankenstein. That metaphor ought to give pause for thought, regarding the subject of responsibility.

    It's also not surprising - though a big joke to BS members - that some people speculated that Jonas himself might really be Mr Goldacre, whose activity in relation to ME/CFS was already under considerable scrutiny. If you wish to learn more about the wider context for this entire episode, and to understand the politics of the battle into which we ME/CFS patients find ourselves thrust - most reluctantly - and in which BS members are presumably unwitting pawns - you could do a lot worse than to read the first few pages of this free online book:

    http://www.scribd.com/doc/8401751/C...n-Goldacre-Quackbusting-and-Corporate-Science

    Perhaps then you will begin to understand what this is about, and why such strange and unexpected accusations have been made.

    You are not far wrong there at all kjm, though I would dispute the part about prejudice.

    It's rather deeper than that, however, and rather than being based on prejudice it is rooted in my experience of 15 years of untreated and unresearched illness, and in my efforts to understand why the medical world has treated ME so disgracefully - to understand why, a decade or more after ME was at last accepted as the real and debilitating illness it is, and made a "strategic priority" by the MRC, there has still never been any state-funded biomedical research into the condition whatsoever - to understand why ME/CFS is still managed by psychiatrists - why they got the whole of this year's derisory research funding of 109,000 - and why people who try to help or research ME/CFS patients are attacked by skeptics and quackbusters, while no such skepticism is applied to the pseudoscience of CBT/GET.

    I have become very skeptical of this whole movement of skepticism, and if it wants to convince me that it is anything other than an army of defenders of the status quo, manipulated by people determined to maintain their control of my illness by suppressing any attempts to investigate or treat it properly, then skepticism needs to turn its attention to more deserving targets than one of the most respected and well-loved ME/CFS doctors in the UK.

    If you had been sick for 15 years, kjm, your whole life stifled and wasted, and if after a decade of useless and humiliating treatment you turned in desperation to an alternative approach, and if you then found that approach was actually highly effective and understood your illness very well indeed, and then you found that the only people making any effort to help you were being ruthlessly attacked...then you would probably begin to feel hatred towards those attackers as well. If you had ME/CFS - which I think it's safe to assume you do not - you would have to work very hard indeed not to feel a whole lot more than that - bitterness, alienation, betrayal, desperation, frustration - the well of emotion and suffering felt by those with ME/CFS is very deep. And if Bad Science wants to convince me that its members care a damn about any of that suffering, then more thorough investigations into the Lightning Process, CBT/GET, and the history of the machinations of the psychiatric lobby and their friends in the insurance industry, followed by an aggressive pursuit of their quackery, would go an awful long way towards that.
  6. Snow Leopard

    Snow Leopard Senior Member

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    It is true though, it is predicated on a negative. It is really bizarre that there is not a "good science" subforum - given the proportion of members who supposedly enjoy discussing science in general. This would provide more balance to the forum and I think you should suggest this to the forum administration.

    I am also disappointed at the lack of response on the forum against the upcoming "Lightening process" trial on children which is clearly quackery.
  7. leela

    leela Slow But Hopeful

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    I'd like to gently suggest that this portion of the thread be moved to a new thread, since officially this one is for keeping interested parties up to date on what is happening with Dr. Myhill and her proceedings.
  8. Wayne

    Wayne Senior Member

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    Hi Leela, I actually think it would be more difficult for me to try to understand much of the context of all of this if it were split into more than one thread. I struggle keeping track of even with single threads. [​IMG] Just my take. [​IMG]

    Mark, thanks much for taking the time to provide some remarkable detailed information. It really does feel like important context, and is helping me better understand the difficult situation Dr. Myhill, her patients and her supporters are struggling with.

    Best Regards, Wayne
  9. leela

    leela Slow But Hopeful

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    Just to be clear (which I ought to have done before--migraine day) the comments are rich and full, and Mark's heroic efforts are truly appreciated.
    I just felt that this thread (of the Myhill threads) pertained most to updates about the proceedings.
    I understand what you are saying, Wayne, and your point is well taken regarding context and understanding. However, my take is that this is not where I expected to be exposed to debate, and I'm too tired for that lately.
    I'll just skim, then, if no one else feels the Good/Bad Science etc discussion doesn't deserve its own thread.
  10. Wayne

    Wayne Senior Member

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    Hi Leela, point VERY well taken. I certainly understand the desire to steer clear of anything that smacks of debate at times. It can almost feel sort of "shocking" if my system isn't up for it at any given time. --- I can go either way on whether to have a separate thread or not.

    Wayne
  11. Mark

    Mark Acting CEO

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    I think you're right leela, there are two different topics here and I've lumped them together, although they are of course tangled together. I'll sort the thread out in the next few days; I also have further relevant info to post on both strands so I'll tidy things up later this week, and I think I can do so in a way that won't be too confusing. Please bear with me while I get round to sorting that out...
  12. Kina

    Kina Moderation Team Lead

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    Mark -- I don't think I will respond to your diatribe against me or a whole forum of people of which only a small percentage are guilty of crimes against Dr Myhill and the whole CFS community. What you wrote is was pretty hateful and inaccurate.

    This comment is absolutely wrong ==
    I read the comment and it was not made about Dr Myhill -- it was made about a poster on the Myhill FB site -- the poster complained to Ben Goldacre who then realized that the thread about Dr Myhill even existed and he threatened to shut down the forum at this point. The comment was downright nasty and so was the person who made it, but that doesn't mean everybody on the forum deserves to be tarred by your brush of hatreds towards -- who -- sceptics. I guess I fall into that realm as I am very sceptical for good reason which is personal and has to do with my special needs daugher.

    In regards to your comments about me, don't jump to conclusions about me and as a moderator I don't think it's appropriate to make unfounded comments about people but who would I complain to????

    Anyways, as this thread is about Dr Myhill, I will just shut my big trap, if you would like to discuss this issue more, you can PM me.

    Dr Myhill will back to the GMC on December 23rd -- I hope she gets an early christmas present. She will get her hearing before the High Court in January and hopefully the outcome will be favourable.

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