The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Countess of Mar joins Dr Myhill's campaign for a Public Inquiry into medical abuse of ME sufferers

Discussion in 'Action Alerts and Advocacy' started by Laelia, Apr 4, 2017.

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  1. Hip

    Hip Senior Member

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    People that see her as a dangerous quack I suspect are the more sheep-like individuals, those who adhere to groupthink, and are rarely able to think for themselves. A doctor like Dr Myhill, who thinks for herself, is going to have some areas of great success (ie, one of the only doctors in the UK that sees and treats ME/CFS as a real biological disease, when most of the other groupthink GPs in the UK just follow the NHS CBT/GET line like sheep).

    But now and then people who think for themselves will get one or two things wrong. That's normal. To only pick out their mistakes, and not mention the successes, is quite biased and unfair. Not to mention pedantic.

    So people who pick up mistakes on Dr Myhill's website, but then fail to mention the brilliant and groundbreaking research that Myhill, Booth and McLaren-Howard published finding blockages and dysfunctions in the mitochondria and energy metabolism of ME/CFS patients (some 8 years before Fluge and Mella or Robert Naviaux published their energy metabolism studies), are in my view being biased pedants.
     
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  2. Valentijn

    Valentijn Senior Member

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    I'm not a Myhill fan. But she's a doctor in the UK committed to treating ME/CFS as a biological disease, which makes her a very rare and generally beneficial entity.

    I don't think it's reasonable to demand that every ME doctor do and say exactly what we want them to do and say, to have our general support. It's not realistic or productive for us to have that expectation.
     
  3. TiredSam

    TiredSam The wise nematode hibernates

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    @Hip So call me a sheep-line, groupthinking biased pedant. I was going to post the source for her original website comments you asked for, but you can find it yourself for that, it's only a click away from one of the links I've already posted, so do some ground-breaking research.

    I must admit I am guilty of taking a mental shortcut - when I see the woolly thinking some of her dangerous advice is based on I do tend to dismiss everything else she says without examining it properly.
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Funny, I have never thought of myself like that.
     
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  5. Stewart

    Stewart Senior Member

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    I started writing a message a couple of days ago about why I thought Dr Myhill's campaign was seriously misjudged and likely to be a waste of time for everyone involved - but I'm experiencing a bout of brain fog at present, and I ended up with an overly long post which didn't seem to express my point particularly clearly. So I deleted it. I'll give it another try, and attempt to keep it shorter this time.

    There is no way that we're going to get a public inquiry at present. No way. In the UK, public inquiries only get announced when there is existing widespread and ongoing concern (and anger) about an issue or episode. That issue needs to be stuck near the top of the news agenda, with successive media headlines screaming "This is a disgrace!" and "Something must be done!". It needs to be a major topic of disquiet in homes, workplaces and pubs, with the public clearly of the opinion that something untoward has happened and that there are questions that need answering. There needs to be no other easy steps that Government can take to soothe public concern and assure people that the situation is under control.

    That's when you get a public inquiry - when there is widespread concern and the Government has no other way of making the issue go away. In order to assuage the public they say "We'll have a big, open independent enquiry into what has happened, blame will be apportioned and lessons will be learnt so this can't happen again" *. You don't get a public inquiry just because a handful of people - even a very large handful of people - go to their MP and ask for one. No widespread and vocal public concern about the treatment of ME = no chance of getting a public inquiry on the issue.

    Public inquiries are ridiculously expensive (£5 million for Leveson part 1, over £13 million for Mid-Staffordshire, over £12 million for Chilcot) so the Government doesn't just hand them out like sweets whenever people ask for one. And when they *do* announce them, they try to control the terms of reference to stop them spiralling out of control and lasting years (like the Saville Inquiry into Bloody Sunday, which took 12 years and cost nearly £200 million - and that was supposedly focussed on the events that took place in a particular locale over a couple of hours...). So even if there was sufficient public demand for an inquiry into the treatment of ME, there's almost no chance of getting one that covers "decades of neglect" - the terms of reference would be much more limited.

    Consequently this campaign - however well-meaning - is unfortunately a waste of time. If you want to go and talk to your MP about ME/CFS there are many more worthwhile things you could ask him/her to do than signal their support for a public inquiry.

    (* - in reality what happens is that the Inquiry's report - full of conclusions and recommendations - is put on a shelf by the relevant Government department and ignored. Quite a few inquiry chairs have complained publicly that the Government failed to act on their report in the years that followed, and wondered what the point was of holding the Inquiry in the first place. The point - as I would have thought was obvious - is that the Government was seen to act, and the public concern was mollified. The Inquiry's conclusions and recommendations are an inconvenience that Government usually does its best to ignore. So even though there's no likelihood of a public inquiry on the treatment of ME, this is probably no great loss...)
     
    Last edited: Apr 8, 2017
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  6. SamanthaJ

    SamanthaJ Senior Member

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    I had been wondering about the public inquiry thing, whether it was putting the cart before the horse. You put it into words much better than I could, @Stewart . There's a great deal to be said for people getting their voices heard at an inquiry, but my impression is you get the inquiry after you've turned the tide of public opinion. It might not be right, but it does seem to be how it is.
     
  7. TiredSam

    TiredSam The wise nematode hibernates

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    I'm sorry but this has been going round and round in my head since I read it, I'm going to have to write something down in order to be able to let it go, which I badly need to do. Call it therapy if you like.

    Not only does Sir Simon get to pat himself on the back as a good researcher for maintaining a constantly critical attitude towards his own claims, but he also gets to confirm during such critical scrutiny that over a 30 year period he has never been wrong. Imagine how doubly satisfying that must be. I'm amazed he isn't more smug about it.
     
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  8. arewenearlythereyet

    arewenearlythereyet Senior Member

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    You might find this helpful @TiredSam

    http://m.wikihow.com/Spot-a-Sociopath

    The only logic he operates within is his own warped sense of himself. Totally not worth trying to fathom his logic, because that's not what he's about. He is not someone to be reasoned with or convinced, because it shatters the artifice that is the world he resides in.

    He will never be convinced that he could be wrong. The best we can hope for is that his level of influence will be diminished by others seeing his delusion for what it is.
     
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  9. A.B.

    A.B. Senior Member

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    While simultanously and quite heroically standing up for science against the hordes of irrational patients who think that he's doing something wrong.
     
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  10. Kina

    Kina

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    I am sure all the sheep-like pedants that consider Dr Myhill to be a 'dangerous quack' have some good qualities too.

    Back to the topic at hand:

    Nothing wrong with that but I doubt it's going to happen any time soon for many many reasons presented on this thread.
     
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  11. NelliePledge

    NelliePledge plodder

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    I dont think this is a particularly well thought through campaign but I do think the concept of organising ME people who are able to commit to a face to face meeting to lobby their MPs face to face at the MP surgery is a very good one. Many MPs are very conscientious about their constituency work but receive many thousands of emails and letters, which are usually dealt with by an assistant anyway. Talking to someone face to face is much more likely to make them understand the serious issues faced by people with ME.

    Also I agree that a public enquiry is unlikely to happen and if so not for years look how long it has taken the Hillsborough families to get justice. And I understand that no doubt MEA and other organisations are talking to politicians about ME but there needs to be public campaigning as well like millions missing. In a way asking for a public enquiry is a way of saying we think this is a really serious issue please pay attention,

    I would hope/expect that the Countess of Mar would be giving the MAIMES campaign some advice about the terms of the campaign and what might start to make some impact with MPs and get some traction at parliamentary level

    Hopefully the direct approach to MPs will bring some of them on board possibly to work with the Countess.
     
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  12. keenly

    keenly Senior Member

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    Dr Myhill is a hero. She has suffered for the plight of others.
     
  13. keenly

    keenly Senior Member

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    Do you work for the GMC? They are a disgrace.

    God bless Dr Myhill. People like you do nothing to help. Linking to septic sites hahahaha

    They are ran by Pharma shills. What next sciencebasedevidence?
     
  14. keenly

    keenly Senior Member

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    Behind Magnesium? Behind L Carnitine? Behind D Ribose?
    I would say anyone who does not recommend Magnesium is an absolute ignoramus, and a dangerous quack.
     
  15. TiredSam

    TiredSam The wise nematode hibernates

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    Yes septic sites are full of shit aren't they.
     
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  16. TiredSam

    TiredSam The wise nematode hibernates

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    You're just proving my point about how divisive she is. As long as she stays in Wales being adulated by her cult following I don't really have a problem, but if she's setting herself up as a figurehead (cough with a book to sell cough) to rally around then not in my name thanks.

    "People like you ...", "Pharma shills", "absolute ignoramus" etc, your point (whatever that might be) isn't made more valid by name-calling. In fact quite the reverse.
     
  17. keenly

    keenly Senior Member

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    Yes, nothing but hostility towards Organic food, supplement and anything not drug based. The shills behind these are the same people trying to ban supplements.

    Constant praise for GMO, pesticides etc, but bashing Organic, erm. Clear agenda. Bashing any doc who used nutrition instead of drugs.

    https://sciencebasedmedicine.org/ and sites like it are an abomination.
     
  18. keenly

    keenly Senior Member

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    She has helped many people, you have not. I see your agenda.
     
  19. Kina

    Kina

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    Okay enough.

    Members are allowed to think what they like but this is going down the slippery slope of personal attacks.

    Thread is now permanently closed.
     
    Last edited: May 27, 2017
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