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The Times covers ME/CFS today with two items (Nov 2, 2016)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Nov 2, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    ahimsa, Dolphin, Valentijn and 7 others like this.
  2. AndyPR

    AndyPR Senior Member

    Children with chronic fatigue get therapy online

    Still trotting out the harassment line still I see.

    That is the full article, commenting is possible. http://www.thetimes.co.uk/edition/n...-fatigue-get-therapy-on-their-phone-0sn50bktx
     
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  3. BurnA

    BurnA Senior Member

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    No mention that it was also heavily criticized by world leading scientists.
    Only critisiced by activists, leading to harassment claims.
    I thought we had moved on from this but no.
     
  4. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Utterly repugnant that they are still playing victim while patients worsen, and in some cases die. They are not alerting people to biomedical research, and quite deliberately so because it would seriously undermine their position. The harassment was dismissed by the second tribunal, but it's still being trotted out.
     
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  5. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Yes, I was just tweeting about the international scientists being left out of that statement. There is so much left out that would completely upend their position if it were included. The more I see of Crawley and her beliefs, the more I oppose the very idea of MEGA.
     
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  6. AndyPR

    AndyPR Senior Member

    And yet they want to engage with the patients for MEGA, or at least they claim they do. They are either so two-faced that it's beyond belief or they genuinely want us to 'force' them to abandon MEGA, thereby proving the saintliness of those brave researchers who, despite everything, still do their best to help us despite us.
     
  7. Jan

    Jan Senior Member

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    This is what I believe to be the case Andy, they don't actually want MEGA to go ahead. It's not in their interest to help uncover the biological findings of ME. They are not stupid, if they had really wanted MEGA to go ahead they would not have resorted to the name calling again yesterday. Unless they are stupid.
     
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  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    So now the BBC, The Guardian & The Times have managed to make it seem like FitNET actually was beneficial, when it was not at all.

    This is simply surreal.
     
  9. Sidereal

    Sidereal Senior Member

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    Every time I think things are finally changing there's a new media blitz of the same old CBT/GET/harassment nonsense and we're back to square one. This is so demoralising.
     
  10. Lindberg

    Lindberg

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    I truly feel it is time for our biomedical reseachers to come together in a pressrelease or newsarticle - to publicly take a stand against the biopsychosocial view and research on ME-patients. This needs to stop and needs to be explicitly and publicly expressed.
     
    Last edited: Nov 2, 2016
  11. BurnA

    BurnA Senior Member

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    I agree it would be nice.

    One problem I see is the blurred lines the CMRC has created. The inclusion of ME charities in an organisation that supports EC is nonsense.
    The days of collaboration for the sake of it should now be over, it's a choice between biomedical or not, it's time for everyone to make that decision and split accordingly.
     
  12. Jan

    Jan Senior Member

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    Yes, but they never do, why not? But would it make any difference now that Crawley et al are actually calling ME a biological disease? There is no longer a point to argue, they are playing the long game to keep their research and therapies making money for as long as possible. Never mind the years they've called it psychological, they are now declaring to the world that ME is real and that they can cure it.
     
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  13. BurnA

    BurnA Senior Member

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    They are saying it's biological but wait, they can still cure it with quackery.
    Wow.
    I think preferred it when they said it was psychosocial.
     
  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Indeed, they are just looking for funding, and they are getting 1 million pounds to do a nr. 2 of something that didnt work?
    Why is NOBODY ARRESTING THEM. It seriously makes me so friigging furious!!
     
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  15. eafw

    eafw Senior Member

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    MEGA does not require our support to go ahead. We - that is those who understand the politics and are objecting to MEGA - are maybe 1000 or so in number (*), and won't be included in the study anyway as things stand. They do not need us or our (again our = internet "activist" ) support.

    MEGA will more than suit their purposes as fatigue study, it will generate grants, papers, status for them and they have plenty of guinea pigs in their clinics who haven't a clue about the politics of the situation, and will not even be thinking about a boycott.

    They also do not care if a biological basis for the disease is found, they are already saying "it's a biological disease that we can treat with cbt". How do more bio markers change that ? It won't.

    If they had wanted to engage with **the minority of ME sufferers who are publically criticising them, but aren't even needed as far as they are concerned**, then they wouldn't have resorted to the whole "rising tensions/hostility" thing. They are sending a message to us that 1) they know how much that they can get away with, 2) we will be sidelined as unreasonable rather than seriously listened to and 3) they will forge on with any old research and there is nothing we can do about it.


    (*) 1000 is a bit of a wild guess. 2000 sign omega, some not in uk, some friends/family/carers. Actual UK patients who may be eligible for study - I said half of total signers just for a round number, but general point stands.
     
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  16. ash0787

    ash0787 Senior Member

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    Its pretty common nowadays to try and paint legitimate criticism as harassment, especially when the individual on the receiving end is implicated in some sort of unethical or immoral behavior as seems to be the case here. Its often difficult to tell though whether these people are motivated by profit or displaying cognitive dissonance though.

    I can understand why some of the researchers might just want to get on with the science and not get involved with political disputes, useful as it might be for them to set the media straight. For example that microchip thing that Ron has, if he did a video demonstration of it working on a few people, some healthy some with cfs, it would dispel forever the belief that the disease is somehow a 'product of the imagination' that some of the public likely still hold.
     
  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    I expect that it's both. The cognitive dissonance results from the fact of the money/power/prestige motive. They think well of themselves and therefore the CD.

    IMO there is no end in sight in the UK of the BPS model. In the past I have read some of the papers by various players.
    If memory serves--they have been saying for quite a while that it is biological in origin--that's not new. They only need it to be perpetuated by wrong thinking--that's all they've ever needed. And more recently they've been increasing the spread of the idea that mind and body are one--muddying the difference between brain and mind (both are little understood but brain can be studied directly; mind cannot).

    So with this concept in place it is an open field for psychological explanations for physical symptoms. In some ways this needs to be challenged as pseudoscience beyond ME concerns.

    I've said before--they feel safe because they are safe. They are protected by political expedience possibly beyond elected officials to include bureaucratic mandarins. They own the media.

    I do not believe (not even a little) that a 'broad tent' approach can lead to any sort of progress for ME research in the UK.
     
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  18. Lindberg

    Lindberg

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    Even if Crawley et al are now talking about ME being biological, the true biomedical researchers could still make a clear statement about CBT/GET. In the Danish paper Politiken researchers from Griffith University and Ola Saugstad from Norway spoke out - so it can be done. It needs though to be more frequently repeated and from more researchers. Preferably together so their word gets the weight it needs - and of course in the light of all the new exciting findings.

    But I can understand that the researchers have more pressing and important things to attend to - perhaps ME Action or someone in the UK could assist in "the spinning", to take on Wesselys role...
     
  19. BurnA

    BurnA Senior Member

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    They may also be reluctant for other reasons, remember how few UK researchers signed the letter to The Lancet.
    I don't know any specifics but I get the impression there is fear involved. Hopefully I am wrong.
     
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  20. AndyPR

    AndyPR Senior Member

    Personally, I think we are unlikely to see most established researchers sticking their heads above the parapet in the UK. When the establishment clearly supports Crawley and her friends, most researchers who rely on the establishment for their funding, to pay their mortgage, put food on the table, etc etc, are going to be very reluctant to go against that.

    Given our limited energies, I'm more and more coming to the view that we should just, in the short/medium term, abandon trying to influence the mainstream in the UK, and work on supporting Invest in MEs research here and all the decent researchers around the world. Then tackle things once we have the biomarker and biomedical treatment that they will eventually discover. The only, really big, problem with that idea is it abandons those of us who are in the UK until all of that happens.

    The phrase "between a rock and a hard place" comes to mind. :(
     

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