1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Simon Wessley replies

Discussion in 'General ME/CFS News' started by maryb, Dec 12, 2012.

  1. Firestormm

    Firestormm Senior Member

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    Only to add, that whilst Mar might at this time be trying to 'call Wessely out' she is not unsupportive of NICE or CBT and GET either. I'd quite like to hear Wessely's response (though he is not obliged to afford one of course), but whatever he does - or doesn't - say; I can guarantee that those who believe he's da evil man - will be mightily disappointed.
    barbc56 likes this.
  2. ukxmrv

    ukxmrv Senior Member

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    Not sure why we would all think that Firestormm.

    After all some of us have had the chance to meet him over the years. We have also met patients of his. We may have had other experiences where he has had influence in our lives.

    Not all the opinions here are being influenced by second hand accounts or reports.
    Wildcat and Firestormm like this.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It's difficult to grasp what exactly Mar's position is - but of course she isn't answerable to anyone, isn't representative of anyone or under any professional obligation or discipline, so she can say what she likes when she likes and never have to account for inconsistencies. I can understand how non UK citizens wouldn't grasp this but there seems to be a woeful lack of understanding of how Parliament operates even apparently on the part of many UK based M.E/CFS affected people. This produces nonsensical extremes of argument, where (in the case of Mar) on the one hand there's an almost reverential treatment given to her utterances on M.E/CFS and on the other, outright scorn for her actions on the APPG. It's almost as though some UK citizens believe they are living in the US and dealing with Congress, or otherwise they are confusing the UK Parliament with their local council.

    In simple terms Mar is a lone voice attracting little or no attention from from anyone with serious influence in the political, or wider social processes. As far as the APPG is concerned it is a creature of Parliament - it is not representative, its members are not answerable to anyone, other than that they are elected menbers of the lower house (and are answerable to their constituents), or have a party affiliation in the upper house (and are answerable to their party) or are non parliamentary participants (and are answerable to their nominating organisations). The APPG is free to set its own terms of operation and Mar is free to argue for whatever she likes in terms of how the APPG should operate.

    My assessment is that Mar is seen (if seen at all) as a (slightly) amusing and anachronistic eccentric, the like of which will not survive the eventual reform of the upper house. Her public wrestling with Wessely is unedifying and while I understand that there are those who find anyone arguing with Wessely falls into the 'one of ours' category, there's an unhappy possibility that the whole spectacle merely adds another layer of incredulity onto the serious politicians' view of M.E/CFS advocacy.

    IVI
  4. Bob

    Bob

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    Ordinarily, I would, in principle, be in favour of a wholly elected legislature.
    But having seen Lady Mar at work in parliament has made me think otherwise.
    I have noted the irony that one of the very few members of the whole of the UK parliament with a keen, dedicated and specific interest in ME, who is always keen to represent ME patients, is a hereditary peer.
    As such, I think maybe that members of the UK second chamber should be selected, by an independent selection body, based on their expertise, and life-experience, rather than elected.
    Bearing in mind that the UK's second chamber is a revising chamber only, and cannot make or pass laws itself.
    Shell and Valentijn like this.
  5. Firestormm

    Firestormm Senior Member

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    Yes. Too frequently I think people tend not to consider the risk/reward ratio. There is I feel a definite risk that all of these letter exchanges will serve to 'bite us in the arse'.
  6. Firestormm

    Firestormm Senior Member

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    Quite right. Presumptuous of me.
    ukxmrv likes this.
  7. Bob

    Bob

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    In some of our forum discussions, some members have suggested that we attempt to have a reasonable dialogue with the psychiatrists.
    Mar has now invited Wessely to enter into a dialogue.

    It won't lead anywhere, because Wessely won't be interested in a dialogue.
    He tends to promote his own interests, rather than engage meaningfully.

    But it will be interesting, if depressing, to see his response.
    Valentijn likes this.
  8. ukxmrv

    ukxmrv Senior Member

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    I've seen other "diaglogues" with SW. It's short sighted to imagine that no one has tried this before. There have been lots of attempts over the years. He's too slippery to answer direct questions.
  9. barbc56

    barbc56 Senior Member

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    In theory, I think a reasonable dialogue would be great. Realistically, why would Wessely even think about doing this? He's received death threats, inappropriate inquiries at his work, inappropriate letters, email and undue amounts of disparagement from our community as well as some of the authority figures we have aligned. It wouldn't be unreasonable for him to think he would be walking into a no win situation or that any such dialogue in that type of atmosphere. would be unproductive or even worth his time.

    I'm just speculating as to one reason he might be hesitant to engage in dialogue.

    IMHO, we have lost some of our credibility because of the above tactics and unfortunately the consequence of that may lead to further miscommunication and misunderstanding. We need to gain back that credibility. If patients perceive that he has treated us unfairly, rise above that, treat him fairly but at the same time state our case in an appropriate manner. Don't go down to what is perceived as his level. Assertiveness is not the same as aggressiveness.

    If you treat people the way you want to be treated you are in a better position to advocate. Again, like life, no promises this would work but I think would be a positive direction to take.

    Barb C.:>)

    ETA I think the following might show why he might not want to "dialogue" with members of our community. Emphasis on might.
    https://noodlemaz.wordpress.com/2012/11/07/john-maddox-prize-2012/#comment-3034
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Well I've used the term 'engagement' which I certainly wouldn't predicate on a necessity of 'dialogue' - M.E/CFS is just one 'lobby group' wanting the attention of researchers, service deliverers and politicians, for us to expect dialogue at every point of contact is hopelessly monocentric.


    Engagement with Professor Wessely by those wanting to further M.E/CFS advocacy is unlikely to ever be rewarding, this does not mean that there is no one involved in psychiatric practice or services for M.E/CFS patients which involve psychiatric referenced interventions, who is amenable influence and even dialogue. Professor Wessely is not the whole of psychiatry, and the only product of a continued focus on him (how many current threads on just this forum ?), is a fantasy script for M.E/CFS activism that casts Wessely as Sauron and KCL as the location of Mount Doom.

    IVI
  11. ukxmrv

    ukxmrv Senior Member

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    Barb,

    I don't think Wessely is acting any differently than he did before he started making the death threats claim. Not sure why you would think that. I've seen earlier correspondence and spoken to him myself in person.

    Do you have any evidence to support the idea that we have lost credibility or that there are any misunderstandings or miscommunications.

    I was wondering how long you had been following his work and if maybe this was the first experience that you had of patient or advocate communications with him?
  12. barbc56

    barbc56 Senior Member

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    I was speculating and why he might be hesitant to engage with us and If I didn't state that clearly I will edit my post to reflect this.
  13. barbc56

    barbc56 Senior Member

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    Maybe I was thinking of this instead of the above post? It's hard to keep track of which forum I heard what especially when the same names are on both forums.:rolleyes:

    http://peoplewithme.com/thread-1925-page-2.html

    post#19

    Sorry about that!!!

    Barb C.:>)
  14. lnester7

    lnester7 Seven

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    hmmm What is the name of the CNN guy (Larry King??) Maybe if an interview is set up with a nonsense reporter that won't let him out of the question?:angel:
  15. Bob

    Bob

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    IMO, I don't think we had any credibility to lose, in certain quarters.

    I do agree that a factual and reasonable approach to the issues can be helpful.
    However, we have a major disadvantage to those in positions of authority, in terms of advocacy, in that, as patients, we cannot commission our own research, we do not have resources and funds at our disposal to propagate our own interests, and we have very limited resources to gather and disseminate our own information.

    The fact that our voices have been ignored and dismissed over so many decades is why so many patients are frustrated.
    If our voices are ignored and dismissed, over decades, then it's no wonder that some patients become angry.

    When we do reasonably, and respectfully, raise concerns, we are still dismissed, ignored, and even denigrated, as has been demonstrated perfectly in relation to the PACE Trial.

    The PACE Trial has been a perfect example of abuse of the system by those with status and authority.
    It has been a perfect example of how, when patients act reasonably and respectfully, and engage meaningfully with the science, they are dismissed and ignored.
    Patients do not have the resources to disseminate the truth widely, and authoritatively, and as such, false information has been propagated as 'fact' by those in positions of authority, with patients seemingly powerless to change it.
    A specific example is the Lancet 'commentary' that falsely states that there was "30% recovery rate" in the PACE Trial, when in fact, no "recovery" was reported in the PACE Trial paper, and the "response rate" was only 11% to 15%. (If only 15% of participants 'improved', then "30%" could not have 'recovered'.) The Lancet 'commentary' was absolutely an error, but the Lancet refuses to change it. Why?

    I could go on about the PACE Trial.
    Shell, justy, Jarod and 3 others like this.
  16. Bob

    Bob

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    It's been striking, in some of the discussions, how some members are placing blame on patients.
    I've seen this repeated, in these discussions, over and over again.
    To me, it seems that some members are buying into Wessely and co's narrative.
    And in doing so, are placing blame on patients, for their own situation.

    Sure, it's perfectly reasonable to discuss advocacy issues, and to try to improve our situation via better advocacy techniques.
    But let's not blame patients for their situation.

    It's been said that patients are not engaging reasonably, or politely, or that they are not being sophisticated in their approach to advocacy.
    This may or may not be an accurate reflection of some of the patient population, but this absolutely isn't the case for the whole patient population.

    And does anyone really believe that if all patients had engaged ever so respectfully, meekly and politely over the years, that Reeves would have been thrown out, and that the psychiatrists would have met us half way, and would have engaged in a reasonable manner, and that they would not have promoted their own agendas, and that the science would be so much better?
    snowathlete, John Mac, Shell and 8 others like this.
  17. user9876

    user9876 Senior Member

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    I don't think ME is even noticed by most people or most politicians. Most of what is going on is between a fairly small amount of people. If you were to pick an MP at random and ask them what they knew about ME it would probably be next to nothing. I don't think letters between Mar and Wessely make any difference. I think the countess of Mar asking questions in parliment may make a slight difference in that someone has to consider an answer within the department concerned. To me the real scandal in the national archive records is not in what they contain but in what they don't. They contain no concern from government about ME, no action plans etc just minimal reponses to outside influances.

    Politicians fear scandals and we need to get it in the public eye that the way people with ME are treated is one.


    Too me this is a good example. However, much of the energy looking at failures of medical research is based on blaming the nasty evil drug companies and ignoring the role that academics, journals and universities play. Here we have a good example of the failings of medical research but the academics cannot blame big pharma so they are not interested. Yet here is an example of the sucess and safety criteria in a protocol being watered down until they are nonsensical. I think making sure people know about this is very important but we need to spread the message outside of the ME community - but first we need really good evidence.

    The question is not how do we work with a small community of people involved in ME but how do we escalate the issue outside of that community. The one recent thing that seemed to have a little effect was making Obama aware. In this country it doesn't matter what the APPG do as a small closed group we need ME to be on the agenda of every MP. Each MP should be aware of how ill people are and how treatments being proposed are not making people better and how there is a huge potential for drug treatments that is not being researched.

    The real question is what is it that will make people in the wider community sit up and take notice.
    Bob likes this.
  18. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Who ? Where ? What ? If you are going to accuse posters here of something, at least have the courage to demonstrate what it is you are accusing people of and exactly who it is you consider to be guilty of these terrible heresies.

    IVI
    barbc56 and Firestormm like this.
  19. Enid

    Enid Senior Member

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    IVI - I think we have all the courage needed now in the light of demonstrated scientific/medical research findings - onwards - oh yes many are guilty - but science now, not opinion, like anyone's including this bunch, yours or mine. Cheerio.
  20. In Vitro Infidelium

    In Vitro Infidelium Guest

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    IMO this is quite wrong, the majority of MPs will have been contacted at some time or another by consituents who have an M.E/CFS diagnosis, and who have sought help with benefits, housing etc. Additionally lots of us have been writing to our on MP, MSPs AMs etc for decades.

    This concerns how politics works at the Party level and how Parliament works - although interconnected they are different. Party operatives will certainly notice anything that involves a member of the upper house, and in this case Mar will be marked accordingly (nutjob) and the association of her cause (M.E/CFS) will be logged in similar association. Faced with a choice between serious academic and nutty old Peeress - M.E/CFS gets shifted into "expert territory, politicians to keeps hands off ! " The asking of questions is classified by the various Government and Oppsition business managers relative to their selfish perspectives along the lines of - "helpful", "unhelpful", "damaging", or "bloody stupid and waste of all our times". Memories in Parliament are long.

    Politicians only fear those scandals that apply specifically to them - if there is no one person or Party to 'blame' then the scandal has little or no purchase. Even if one could construct a campaign which identified M.E/CFS patients as legitimate 'victims' (only children, mothers and heroes realistically have a chance to qualify) of scandal - who is there to 'blame', there's always the get out that science hasn't offered any option for intervention so what is that the Politicians should/could have done.
    What potential for drug treatments ? The APPG is a potentially valuable line of communication, but Politicians need to have something on which to act, simply saying here's a problem isn't awful ? doesn't provide the average politician with anywhere to go. Asking for more money for research without some argument about why and how the existing research budgets should be 'cut up' differently is an argument without traction. Complaining about how previous budget allocations were spent, will not interest most politicians - their concern will be 'what now ?" As far as alerting current MPs - every constituent can write a basic letter with basic information - but unless we have some to ask our MP to do, then there is no chance of the MP, or MSP or AM acting on our behalf.

    IVI

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