International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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"Unrest" updates

Discussion in 'General ME/CFS News' started by Sasha, Mar 11, 2017.

  1. Binkie4

    Binkie4 Senior Member

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    My MP, Ed Davey, has committed to go.

    We knew the date a while ago, cannot remember where from, and he responded with a yes. He has also signed petitions, early day motions etc.

    Could I just urge everyone to work, work, work at their MPs. Ed is very receptive but we worked hard on our previous MP from another party who did get involved eventually. It can be done. It's incredibly hard working individually on MPs: no group emails, just individual letters arguing specific points, again and again.

    I am lucky to have a strong support in my husband. It takes so much time and energy but I think we can achieve more for people with ME if we involve our politicians.

    IEDIT: paragraphing
     
  2. Joh

    Joh Inactivist

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    Hi Yogi, more info with links on this PR thread: http://forums.phoenixrising.me/inde...e-guideline-tabled-by-stephen-timms-mp.54154/
     
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  3. dannybex

    dannybex Senior Member

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    I highly doubt that Jen and company are 'cooperating' with Wessely, Crawley, et. al.. No doubt their plan is to bring them into the fold so that they can educate them -- point out the errors in their work and bring them into the 21st century of research into ME/CFS.

    "Our cause" is her cause as well. She's done more than anyone else in the history of this illness to bring the truths about it to both the general public and the doctors who treat them, and to suggest that she might be in cahoots with 'the enemy' is unfair. I'm not saying you're doing that @Inara, but there are quite a few out there on twitter who have the gall to suggest as much and worse.
     
    Last edited: Oct 18, 2017
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  4. NelliePledge

    NelliePledge plodder

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    Yes great I've posted this YouTube of the ITN newson my local Facebook group and other online places I go to.

    I'm going to email it to my MP tomorrow to remind them about the screening on Tuesday. Although not signing the EDM I've asked for a meeting which they seem open to.
     
    Last edited: Oct 18, 2017
  5. Inara

    Inara

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    I'm really not doing it :) at least, I didn't mean to. I'm not on twitter either. And I am thankful for all that is achieved.

    Yet a fact is that Wessely&Co are more powerful than we are and they have proven time and time again that they won't be educated. The same can be said for most politicians.

    It was a just a thought, that caution might be needed.
     
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  6. Inara

    Inara

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    It's sad there is no such event where I live - even MPs go to watch!
     
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  7. Demepivo

    Demepivo Dolores Abernathy

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    ITV News have put a shortened clip of their feature on their social media. Unfortunately the GET & NICE stuff haven't made the edit. Worth liking & RTing though :)



    https://m.facebook.com/story.php?story_fbid=10155282026482672&id=148007467671&_rdr&hc_location=ufi
     
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  8. Demepivo

    Demepivo Dolores Abernathy

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    Also short Guardian review of film. Positive about film but doesn't go into the issues raised...

    https://www.theguardian.com/film/20...out-chronic-fatigue-syndrome?CMP=share_btn_tw


     
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  9. Old Bones

    Old Bones Senior Member

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    Well . . . the Guardian appeared to be supportive of Jen’s film. Unfortunately, by linking to a previously-published article in the “Read more” box, it again raised the issues from the “wrong” side of the controversy.

    This February 2016 article (which several PR members have already commented on) told the story of Samantha Miller who felt “sleepy all the time” after recovering from a viral infection.

    Readers are reminded that chronic fatigue syndrome is controversial, that there are disputes regarding whether it even exists, and that it has often been claimed to have a psychological cause. And let’s not forget the “yuppie flu” nickname.

    We are introduced to Tim Noakes, a sports physiologist from South Africa who believes that fatigue is not physical, but rather the brain interpreting a sensation or emotion. But the brain “has got its settings wrong. It’s overestimating how fatigued you are.”

    Again from Mr. Noakes: “. . . this ‘does hint that their condition might be influenced by psychological factors’. Indeed, one of the most robust scientific findings regarding chronic fatigue is that, when patients are convinced that their condition is biological and untreatable, and fear that engaging in activity will be harmful, they are much less likely to recover. ‘If they believe it’s incurable, it’s incurable’.”

    Lucky Samantha Miller . . . she was referred to a specialist named Peter White who was developing the idea that a combination of genetic, environmental and psychological triggers causes the brain to reduce what it considers a safe level of exertion. But here comes GET to the rescue . . . described as slowly retraining patients’ brains that each successive activity level is safe.

    And of course CBT, which helps patients to challenge negative ideas and beliefs that they have about their illness, based on the finding that, as long as patients are terrified that any exertion will cause a crash, the fatigue will maintain its grip.

    Readers learn about small clinical trials into CBT and GET, and the PACE trial (including recovery statistics), and that “White’s approach was the best treatment available and demonstrated that recovery from the condition is possible.”

    They also learn that the ineffective pacing approach advocated by patients is counterproductive, because it reinforces negative beliefs that act to maintain the condition rather than allowing patients to recover.

    Here’s a new one for me . . . the speculation (published in the British Medical Journal) that chronic fatigue might be a “meme”, described as “a psychological idea or behaviour that is transmitted from person to person.”

    “The authors of the article argued that several medical conditions through history might be due to memes, such as “railway brain”, a combination of fatigue and psychiatric symptoms that affected travelers on trains in the mid-19th century and was thought to be due to invisible brain damage caused by the jolty ride. Perhaps, they said, some aspects of chronic fatigue are spread in a meme-like fashion too.”

    All ends well, at least for Samantha Miller -- two-years recovered, thanks to CBT and GET.


    Yes, the review of Unrest was positive about the film. It nevertheless has the potential to do a lot of damage with its link to the article summarized above.

    Anybody up for commenting on-line?

    Edited to tag @JenB so she'll know the possible implications of providing a link to the Guardian "Unrest" review on her social media accounts.
     
    Last edited: Oct 19, 2017
  10. CFSTheBear

    CFSTheBear Senior Member

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    That link is likely to be completely automated via tags, as is much of their content management system. Just FYI, thought I'd point out that no one would have made a conscious effort to place that link there, despite the inaccuracies.
     
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  11. Yogi

    Yogi Senior Member

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    No you have completely misunderstood. I 100% support everything from Jen and company.

    I don't want to derail this thread but I just wanted to point this out as I was shocked and disturbed by Action for ME (AFME) partnering with Unrest.

    I have never said that Jen and MEAction have cooperating with them. That is 100% wrong and a misunderstanding.

    The point is (AFME) have been cooperating with the BPS and pscyhs and there is evidence for this. AFME are a patient charity they should not need educating. They should represent patients already? I am unsure if people at MEAction/Unrest know this.

    Action for ME are the charity front of the BPS psychological school of thought who have deceived UK patients for years. The root cause of the problems in the UK for the last 20 years has been the psychiatrists and the BPS (Wessely, Sharpe, Crawley, White, Chalder etc) have claimed they have patient support for PACE, FINE, GETSET, SMILE and other behavioural GET trials etc because of AFME's support.

    MEAction have rightly challenged these trial via petitions etc and protests. But here we have AFME partnering with Unrest and MEAction and Jen. AFME are the only charity in the world that still supports the PACE trial in 2017 and has refused to support any letters against it.

    The names are similar and I think Jaimes has also said that some people get confused over the MEAction and Action for ME. I 100% support MEAction. I just wanted to raise this in case Jen and MEAction are unaware as AFME is diametrically opposed to many things all the other charities want. I feel really bad if AFME fundraise off the back of this like they have exploited other campaigns such as MillionsMissing for the own benefits before.

    @Inara - Regarding your post above. You may find this helpful as charity fronts are sometimes used by other corporate interests as cover.
    http://forums.phoenixrising.me/inde...ded-by-action-for-me.44622/page-3#post-726339

    There is history about AFME in some of the links below.

    Anyway I don't want to further derail this thread. Sorry!
     
    Last edited: Oct 19, 2017
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  12. NelliePledge

    NelliePledge plodder

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    The guardian article was pretty mealy mouthed in my view. Particularly the ending. May be the editing rather than the journalist but it came across to me like this is what their position is - if you want to believe that.
     
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  13. Joh

    Joh Inactivist

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    I agree with @jstash, that these are automated tags. After 50 years of cr*ppy articles, it will happen again, that with any good new article about ME, a horrible old one will be tagged. Even Unrest can't erase 50 years of misinformation.
    We had this problem in Germany with the first great radio report, that was linked to the German Edward Shorter on the website - pwME reached out to the journalist and the journalist asked the editing staff and they deleted the horror-link. So it might be worth to very politely ask if someone feels strongly about it.
    I guess we just need more good articles, and with the next good article in the Guardian, the Unrest article might be tagged and so on and the BPS ones will be forgotten. :)
     
  14. TreePerson

    TreePerson Senior Member

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    Yes I agree with you. I thought it was grudging. And there was perhaps a subtle inference all the way through that he wasn't convinced that it is a physical illness.

    It's difficult to pin this down. But I didn't like the sentence that starts "Luckily for her she found just enough inner strength" - The first time I read it I wondered if it was sarcastic. It's certainly possible to read it that way.

    "The loving but baffled family members", seems to put her very much on the outside with the families rather than with the sufferers. He didn't really seem to have been moved by the plight of patients.

    "The film staunchly argues" is annoying as well. I mean it could've said "convincingly" or "movingly".

    "The debate rages on… But the suffering is real" leaves the suggestion of an imaginary illness kind of hanging in the air.

    I felt that he didn't want to associated with validating the illness. And this does seem to be The Guardians position.
     
    Last edited: Oct 20, 2017
  15. NelliePledge

    NelliePledge plodder

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    Yes thanks for explaining this better than I managed to @TreePerson
     
  16. Inara

    Inara

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    First of all, thanks a lot for this information! I think it is quite important. I didn't know it. One reason is that, indeed, behind some "good" movement you can often find other interests, and this movement is used for these interests, often without the followers knowing it.

    This is what unsettled me - not Unrest or MEAction, sorry this was misunderstood.

    Best wishes
     
  17. Joh

    Joh Inactivist

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    Hi @TreePerson, thanks for your analysis, it's funny because you put every single thought I had while reading into words! E.g. had to look up "staunchly" while reading the article and really hoped it would mean convincing - to turn the article around - and was so disappointed when I read the meaning! For me this was the worst review so far. But if this is the worst it can get with Unrest, I'm relieved. Still baffled though how the author could watch Unrest and then write stuff like this.
     
  18. TreePerson

    TreePerson Senior Member

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    Yes I agree the worst so far. It's funny I read it yesterday and didn't like it. And I could identify the bits I didn't like but I couldn't say why! It's taken me a whole day to home in on it. LOL.

    I haven't seen it yet. One of my daughters has seen it and said she gave up trying not to cry and that overall she thought it was successful.

    The Guardian are not supportive of us though it's weird that it should extend to a film review. I hope he wasn't gagged. I assume that those in charge at the paper are friends with Simon Wessely and his wife.
     
    Last edited: Oct 20, 2017
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  19. CFSTheBear

    CFSTheBear Senior Member

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    Have commented pointing this out - I think it's a very good review otherwise.
     
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  20. NelliePledge

    NelliePledge plodder

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    Good article apart from that one word would be great if he would edit or clarify
     
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