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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. Cinders66

    Cinders66 Senior Member

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    I think it's Important to campaign for the development of effective treatment rather than imply that it's there already, when it isn't. FINE trial published and showed the ineffectiveness of CBT and GET for the severely ill. This should have triggered an effort to find medical treatments that actually worked, based on first going all out to increase basic understanding of what's happening in the ME population and especially the severe. It hasn't happened and there's not the climate or incentive for it to happen. .

    Regarding the attitude that people with ME don't need specialist services because there's not medical treatment, how was MS managed in the days before their treatments were developed ? It's surely telling that some of our key researchers - Drs Newton and Bansal and even Crawley are also clinicians in the field. Hasn't part of the vicious circle been that Physicians beyond GP level arent working with the patients to gain more than superficial knowledge & to get an interest in also doing research?
     
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  2. Invisible Woman

    Invisible Woman Senior Member

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    I am afraid of all that with the added twist when the Norwegians and Ron Davis and all the other fine researcher worldwide are ready to publish their results:

    "Did we not have a conversation about this recently? Can't keep revisiting it every five minutes. Put it on a static list and maybe we'll have a look in another 5 years time."
     
  3. Invisible Woman

    Invisible Woman Senior Member

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    Badly. Lots of psychiatry involved....
     
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  4. A.B.

    A.B. Senior Member

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    I think they were sent to the psychiatrist to treat their "conversion disorder".

    Medicine doesn't really seem to have a plan on how to deal with chronic illnesses it doesn't understand yet. Maybe the message should be that a plan like this is needed. One that respects patients and avoids psychologizing.
     
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  5. Laelia

    Laelia Senior Member

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    I think it would be really helpful to establish exactly what the quality of evidence is behind the treatments which Dr Myhill recommends. Has anyone on here looked into this in any detail?
     
    Last edited: Apr 6, 2017
  6. Laelia

    Laelia Senior Member

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    This was meant to be a reply to your comment about it looking like quackery to most @A.B.
     
    Last edited: Apr 6, 2017
  7. Molly98

    Molly98 Senior Member

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    OK, now I am just confused :confused:
    Are there two threads on this? because I don't know if I have got mixed up and posted in the wrong one? I am sure this happened last week too with two that were so similar, it enough to send my ME brain into a spin.

    Anyway I think what I wrote was meant for this discussion..... maybe :confused:

    so I will post it here, sorry, please ignore if you have read it in another thread somewhere.

    When I first heard of this campaign, I thought great, an inquiry into the abuse and neglect of ME patients is so badly needed. There needs to be some sort of recognition of the harm done, in order for institution and individuals and the public to learn from it and move forward in a better direction and make sure this never happens again.

    I would like to see justice for many ME patients who have been so badly treated and this looks like a step in the right direction towards getting that initial vital acknowledgement of what has happened and hopefully address the current BPS model that is so harmful.

    But upon reflection and on reading through the comments I do wonder now if this is the right timing and the right person to do this.

    Timing is crucial and I am not sure if this is ultimately the best time.
    I think given another year or two of research hopefully things will have progressed to the stage where more is known and the biomedical facts are undisputable.

    To many of us, that appears to be the case already, but to those outside the ME world, the BPS brigade are going to continue to argue will full force that it is not indisputable and there is an alternative theory and understanding of ME. They will continue to do this until their situation becomes absolutely untenable. The difficulty is that they have the use of the media and they will use it just as they have before.

    We are the weaker party, we have to think tactically, strategically and longer term.

    Imagine how they will portray a campaign led by Sarah Myhill.
    Her treatments may help some but not all, but they will portray her as some hippy alternative quack, they will use the media to discredit her and her practices and in doing so discredit the campaign. The first image the media present will stick and could take years to undo and of course, it will be whatever image the BPS lot want to portray to protect their interests.

    It is unlikely that if this fails, we will be abe to start a similar campaign in the near future, MPs etc won't want to give it another try, the public will be tired of it as will health professionals.

    I like the idea of an enquiry, I think there should be one, but I think we would have a lot more clout and make a lot more progress if we wait a little while until evidence is unquestionable and the people who have dictated the narrative for so long truly have their backs firmly up against the wall.

    I also think a campaign led by charities and other organisations would be better than 1 single doctor in private practice. I think her book etc should be out of it all together.
    There is enough materials to draw on to support our case without resorting to the book of the person who is leading the campaign. I just think it makes it very vulnerable to criticism and accusations.

    We also know doctors lives can be made hell when they take a stand in the world of ME. She is very brave and courageous to do this, and I admire her strength and courage to do this and her intentions, but I think there is safety in numbers and also influence and power in numbers, a collective of organisations and researchers and clinicians acting together would be better than this approach I think. I also think the push has to come from mainstream medical research and practice rather than the fringes.

    But maybe I am just being critical because I have an MP who is useless and would not give a shit, compassion and real genuine concern does not appear to be in my MPs nature unless it comes to business interests.
     
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  8. trishrhymes

    trishrhymes Senior Member

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    Personally, I'd rather they closed down all the CBT/GET 'services' and replaced it with a service focused on diagnosis, including more thorough testing, eg for things like POTS, EDS, cardiac problems, and MCAS, for example, some of which can be treated.

    Once diagnosed, I'd like to have been offered a single session with someone knowledgeable about current research and pacing, and offering help with pain and sleep medication and any other symptomatic treatment suitable.

    And I'd like to have been given a leaflet summarising current knowledge, outlining how to pace using diaries or electronic monitoring, and with web links to the MEA and PR for ongoing support and information.

    The problem is, which specialists would take us on - neurology, endocrinology, cardiology, gastroenterology, and rheumatology all seem to have a possible role, which means we end up with none of them.

    @Jonathan Edwards , can you explain how multi-system conditions like ME get included in particular specialisms? Is there some mechanism by which an overarching medical body decrees who must deal with us?

    We seem to be continually falling between the cracks between specialisms, and somewhere down there among the dustiest cracks, we find the crackpots, otherwise known as psychiatrists. We're like orphans without a parent to protect us and taken under the malign wing of the child molesters, to use an inappropriate metaphor.

    Edit to add: I realise this is a bit off topic. I can't support Dr Myhill's campaign because I don't think it's right to focus it around the work of one doctor, however well intentioned and popular she is with some patients. It needs the support of all the major ME charities if it is to have gravitas. And the timing feels wrong to me too. Though I applaud individual's efforts in educating their MP's.
     
  9. Invisible Woman

    Invisible Woman Senior Member

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    I agree @Molly98.

    I hate to sit back and criticize someone who is prepared to put a bit of effort in and stick their neck out and sooner or later we do have to take some action......

    ....but sometimes it seems better to keep your powder dry and I can't help thinking that this might be one of them.
     
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  10. Molly98

    Molly98 Senior Member

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    I think you have done an excellent job of summing up what should be in place of current service @trishrhymes

    Blimey, you have sold it to me, I like this, I would go. Perhaps we as a group of ME patients need to be putting an alternative proposal for services to the NHS or local health services, based on our current needs and selling it as a money saver because I am sure it would be. Then propose that the money saved, should indeed be saved to go towards future rituximab or other treatments once approved or towards other bio research into ME.

    Maybe this is what is missing, that we need to be giving them an alternative based on patients needs right now.
     
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  11. Laelia

    Laelia Senior Member

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    Unless someone does something drastic to try and put a stop to this campaign, then I think it's going to go ahead regardless.

    Given that this campaign probably is going to go ahead regardless, I think you might have inadvertently created a good argument here in favour of getting behind it! ;)
     
    Last edited: Apr 8, 2017
  12. tinacarroll27

    tinacarroll27 Senior Member

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    Without patients behind the campaign, the campaign is surely dead in the water. I don't know how many people with ME have got behind it but I can't see it taking off if hardly anyone gets involved. I also feel the time is not right for this and that we should bide our time and wait until we have better ammunition to throw at them. As much as I enjoyed reading Dr Myhills book and I think her intensions are good, I don't think her book is the ammunition we need, I could be wrong but my gut feeling says the time is not right for this.
     
  13. Cinders66

    Cinders66 Senior Member

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    I disagree time isn't right. 2 years waiting is two years until we even move to start msking things better. We should have had ongoing campaigning from the time of the Gibson inquiry and with the IOM report and much more evidence around biological abnormalities plus inadequacy /inappropriateness of GET; research supporting quality of life and severity plus MRCs own evidence based report on lack of funding for research vs cost of the illness to the state and AFMEs reports showing lack of medical care and benefits access for the severe, I think we already have plenty to throw at them as to a general case to answer.
    It could be done by the right people (people being recruited/elected to lead and run it rather than those currently Heading things) coming together but I have concerns on a Dr Myhill led movement and I have concerns on any actual appetite in the patient community as a whole, given the lack lustre charity support for the unsustained uk #millionsmissing campaign which could have taken off into something bigger and determined and sadly fizzled after the gatherings with shoes ended. .

    In America they don't have any more biomarker conclusions than we do but there's been sustained campaigning and lobbying since 2015 and it's getting progrsss.

    I think it unlikely any uk major charity Will support any major campaign until all is much more advanced, frankly when we will much less need an inquiry, it will then just be looking back in terms of injustice etc. We need the formation of a strong advocacy group in the uk, to do the kinda things solve ME/CFS and US ME action are doing and beyond, as our unique British position with a vocal CBT Lobby, a state funded NHS and a large severe population make our situation different.
     
    Last edited: Apr 6, 2017
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I absolutely agree. That was roughly what I tried to put across together with IiME and colleagues to the Chief Medical Officer's Deputy. The worry is better diagnosis does not tick the 'effective treatment' box.

    No, it is pot luck. Lupus is done by rheumatologists because the patients often have joint pain. They also have kidney failure and sometimes go to nephrologists but rheumatologists tend to take charge. We also tend to do scleroderma, which is really not very rheumatological. Muscle disease sometimes goes to neurologists and sometimes to rheumatologists. Tuberculosis goes to chest physicians even if it is in the spine.
     
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  15. Laelia

    Laelia Senior Member

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    I'm very sorry Molly, this is my fault. It was not my intention to make anyone's ME brain spin :(.

    I was excited to learn the news about the Countess of Mar getting behind this campaign and wanted to let everyone know about it! I didn't really think this through though, on reflection I should have simply asked @AndyPR to update his thread title. There is really no need for both of these threads.

    @Sushi Please can you merge this thread with the following one?:

    http://forums.phoenixrising.me/inde...care-and-treatment-for-people-with-m-e.49345/

    You can move the content of my thread over to this one and then delete mine. I'm so sorry for this extra work I have created and the confusion caused.
     
  16. Molly98

    Molly98 Senior Member

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    Aww thank you @Laelia , no worries at all I totally understand your reason, I am just never sure when I come across these things if it is my brain fogged mind and I am forgetting things or if there actually are two threads. It's a bit like the whole you take all your pills but then within seconds you have no idea if you have taken them or not. :)
     
  17. TiredSam

    TiredSam The wise nematode hibernates

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    The idea of Sarah Myhill being the voice of the patient made me shudder, I think she'd be an absolute liability.

    I think we've seen a fair amount of what she's capable of. Here's some information about her position and advice to patients on the MMR vaccination:

    https://jdc325.wordpress.com/2010/04/18/doctors-and-vaccination/

    Which led to this:

    http://news.bbc.co.uk/2/hi/uk_news/wales/mid_/8650048.stm

    I think the following gives and indictation of the possible results of Dr Myhill entering the political arena on our behalf:

    http://www.skepticat.org/2014/01/dr...ing-ill-found-fears-for-their-health-say-gmc/

    One the one hand she seems to inspire almost cult-like loyalty and devotion from thousands of grateful patients, on the other hand she is seen by some as a dangerous quack. Whatever you choose to think about her, rather than being a patients' voice we can all unite around, she's more likely to be thoroughly divisive and an easy target for those who would like to undermine the credibility of PWME.
     
  18. TiredSam

    TiredSam The wise nematode hibernates

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    This is what was on her website before it was taken down:

     
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  19. TiredSam

    TiredSam The wise nematode hibernates

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    One more post before I'm accused of a witch-hunt - I found the following interesting:

    http://www.skepticat.org/2010/04/dr-myhill/

    Mainly for anyone who enjoys wading through pages of such stuff, which I must confess I do. For anyone who makes it half-way down, PR gets an honorable mention and it's interesting to see how we are/were perceived, and if you make it all the way down to the comments section you'll be rewarded with this classic from Wezzer himself:

     
  20. Hip

    Hip Senior Member

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    That's absolutely fascinating. Were there any references given for that statement on Dr Myhill's website, TiredSam? Do you have a link to the original statement? I'd never heard that idea before, but it could explain a lot about the increased incidence of ME/CFS.

    It could mean that the introduction of the poliovirus vaccine in the late 1950s might be the cause of the massive international increase in the incidence of ME/CFS that occurred some two decades later, in the 1980s.

    This is because if natural wild poliovirus infection as a child provides some protection against the effects of ME/CFS-associated enteroviruses later in life, then removal of that natural poliovirus infection may well explain why ME/CFS incidence exploded from the 1980s onwards (presumably when those infants first vaccinated for polio in the 1950s and 1960s got to the typical age when ME/CFS manifests).


    Prior poliovirus infection most likely does provide immunological cross-protection against coxsackievirus B, as this paper talks about the differences between Estonian children immunized with the live attenuated polio vaccine, versus Finnish children immunized with the inactivated polio vaccine. It was found that the Estonian children given the live vaccine have stronger T-cell responses against coxsackievirus B4, which the authors suggest may explain why type 1 diabetes (linked to coxsackievirus B4) is 3 times lower in Estonia compared to Finland.

    So even with the polio vaccines, the live virus vaccine seems to ramp up T-cell immune responses against other enteroviruses like coxsackievirus B more than the dead virus vaccine does. Thus presumably, natural wild poliovirus infections will provide even stronger T-cell responses against enteroviruses.

    It is a fascinating idea that the introduction of the polio vaccine could have led to a subsequent rise in the incidence of ME/CFS, because natural wild poliovirus infections in children were providing cross-immunity to ME/CFS-triggering enteroviruses. I think I might post this in a thread of its own.

    As an aside: it would be very interesting to compare the prevalence of ME/CFS in people given the live attenuated polio vaccine (Sabin vaccine) as a child, versus the prevalence in those given the inactivated polio vaccine (Salk vaccine). That paper perhaps suggests that ME/CFS would be more prevalent among those give the inactivated polio vaccine.

    The Sabin live polio vaccine is given orally on a sugar cube; the Salk inactivated vaccine is given by injection.


    @halcyon may be interested in this.
     
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