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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. Merry

    Merry Senior Member

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    justy, that's sweet. But I don't think that the couple of blurry clips I got the times I accidentally switched my point-and-shoot digital camera to video recommends me as a film director. We need a real director -- we all want to get rich, right?

    Desdinova, yes, hmm, a possible lawsuit for defamation. I keep forgetting about the UK's libel laws. Americans, fortunately, are now protected from being hauled into British courts for libel suits. I'm not sure how this works for a film with employees and financing from multiple countries. Well, perhaps it would be more fun, anyway, to fictionalize the script and say it was inspired by real events.

    If only we had the energy to pursue this. . . .
     
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Urbantravels
    true, but Cicero was a good guy and in the end, very brave ;)
    I'm thinking more...Erastes, as portrayed by Lorcan Cranitch :p
     
    MishMash likes this.
  3. snowathlete

    snowathlete

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    Couldnt agree more. The 'treatment' for us with ME/CFS is CHEAP, CHEAP, CHEAP!
    Why spend real money on a complex illness, it could cost tens, hundreds, even thousands of times more.

    I'm glad that the Countess has made the letter open and stated things as they happened, so that we know. I think she's great.
     
    Min likes this.
  4. Firestormm

    Firestormm Guest

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    Wessely's reply to Lady Mar would appear to echo (predictably) the confusion I noted above:

    I am sorry to say - truly - but it was rather predictable this would occur. You don't go up against someone with crap information and poor support. I haven't checked the transcript that he has included above - do I really need to? It's so bloody predictable.

    This happens all the damn time. If you want to criticise Wessely or others than be sure what your are quoting is correct and in context. This is so basic it's room 101. We all have different ways of viewing and interpreting the same evidence - but the above reaction is what will keep happening every single time this 'issue' is raised.

    Each time it does - it undermines and weakens the foundations of any argument by any 'advocate' no matter who they are. It's rather disappointing.

    Lady Mar's reply to the above:

    If Lady Mar had stuck to the questions pertaining to the 'model' applied to PACE we could perhaps have avoided the other stuff. I'd be surprised if now any notice is taken of these questions - indeed they should really be addressed by someone other than Wessely.

    If White has apologised for the edited letter and it's incorrect inference or slight, then I'd suggest it was he that should be also addressing matters pertaining to PACE. I really though cannot see any of this strategy getting us any further forward.

    It's a bloody shame. I happen to like Margaret and have corresponded with her over the years. She more than deserved the charity award last year. I think though she has been ill-advised in relation to Wessely and that is a crying shame.

    Might dig out the Hansard transcript from the years mentioned later - for now - I can't be arsed :)
     
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  5. Stukindawski

    Stukindawski

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    I've kept quiet over the past couple days and I figured I'd see how this develops before commenting. Professor Wessely's propensity to only answer questions he can gain traction on is pretty clear to see again. Since nobody can compel him to do so without some sort of official inquiry, this will likely continue.

    Even the PACE questions here don't necessarily cut the mustard. People like Bob, Peter Kemp and Graham have provided clear ammunition to ask highly important questions about PACE. If the questions are not incisive enough, it's quite possible that Professor Wessely will just regurgitate the initial press release. The whole 'evidenced based treatment' line in ad nauseam repetition is something that people by now should be sickeningly accustomed to.

    You put yourself in a tricky position Firestormm. We come from a generation of folk with a disease who have been mocked by friends, family and the medical profession (and in some cases abused by it), mistrusted and abandoned. I've seen a girl break down in tears because her father refused to accept her illness. The anger and frustration resulting from this is easy for me to understand.

    The speed at which Lady Mar's letters gained universal approval reminded me of the way people feel and the suffering they have endured. I share many of your concerns about this correspondence. I do think it's highly likely that there is some justice to be sought after, but pride cannot be an obstacle to it.

    Lady Mar could make mistakes and still get some traction, however this will require that her correspondence receives an audience and has some consequence outside the bubble of our community.

    I am reminded here ultimately of something Alex said about how the combination of politics and science is key to addressing ME/CFS advocacy. The latter I find a little lacking.

    There are patients and advocates working very hard to provide rational, concise and cutting information that we simply MUST see put to the right people and dragged into the daylight. Ultimately I hope I get to eat humble pie and that Lady Mar provides the 'sea change' people have been waiting for. Perhaps she knows something I don't and is storing up a hidden haymaker. In my (flawed and subjective!) opinion, this would be mandatory for getting Wessely on the ropes.
     
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  6. Firestormm

    Firestormm Guest

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    Morning Stu,

    Not sure what you mean? Tricky position? As evidenced perhaps by my 'revelation' the other day on another thread I think here on PR; about the attempt to take my own life in the 3rd year of this diagnosis, when I was bedbound, and rather skeletal, etc. - a decision not easily taken and borne solely out of frustration with the medical establishment who I felt were simply not 'doing enough' or 'understanding me' after I felt I had 'Done everything!': if you are thinking I do not understand (as others have) you would be mistaken (as others are).

    Perhaps this is not surprising given that I have been around for a while but only really 'opened up' on private forums before or in interviews and such. Here on PR and on other forums we don't as a rule meet or post in threads conducive to such revelations. So I don't tend to judge anyone's opinion of me too harshly - and I suspect you didn't know.

    Lady Mar and I have exchanged correspondence for some time. As our only advocate in the House of Lords I very much appreciate her efforts. This last letter though was rather unfortunate in my opinion. And it was fairly obvious how Wessely might respond.

    As to the specific questions relating to PACE etc. well yes they would be good to hear addressed. But I think it is White perhaps who they are best addressed to. Wessely is old news I believe in this regard. Again, people are using his CBT manual from 2002 and chasing his often erroneously interpreted and communicated 'beliefs' - it is rather akin to a vendetta now.

    Please. ME has been a baptism of Fire (a Firestormm indeed) for me as much as it has I expect for you. I have no problem returning to what I have said in a comment and better explaining myself.

    And for the record I have just made an inaugural post on that place that receives universal condemnation from those who 'really know' about it - Bad Science - on this very subject (the exchange of letters and threats).

    All I want, Stu, if for people to take a bit more time to consider the action they are taking, the information they are using, and the quality of any research they are quoting from; before they launch into something that has the potential to reflect badly upon us all.
     
  7. Stukindawski

    Stukindawski

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    I don't doubt you personally (which is why I felt happy to put both of us in the collective pronoun 'We'). What I mean by tricky position is that, while there is merit to what you say, it is tricky to say it without subjecting yourself to an adversarial position. In fact in that manner you earn my respect by exposing yourself to any level of criticism and sometimes insult.

    Where I find you a valuable critic of approaches to advocacy, others have viewed you..differently shall we say :D I've read your contributions for a long time ;)

    Perhaps the implication of my message doesn't come across right, or perhaps it's a mistake on my part, or even perhaps you've been shouldering too much on your own.

    I think it's important to put criticism of 'approved' advocacy in the context of the suffering it represents, in the same manner that we cannot hope to address the wider press without condemning abuse aimed at researchers. It shouldn't logically be necessary but, I think it's going to be for a while to come.
     
  8. Firestormm

    Firestormm Guest

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    Wessely refers to a debate in the House of Lords led by Lady Mar in January 2004 (mentioned in his reply above) and in full here: http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm

    The reply from Lord Turnberg is interesting and depressing at the same time. Interesting because of what he has said was the position in 2004, and depressing, because the situation has remained unchanged:

    It is perhaps unfortunate that Lady Mar's comments and the quotes she makes relating to Wessely are the only ones that are still used on the internet today to define our 'plight' and our 'fight' against these 'psychosocial approaches'.

    Unfortunate for us too that these same claims are now more than ever being challenged for their correctness. I wonder how much of our complaint is really a reflection of the frustration we feel when the interventions offered are simply not enough?

    Not sure I'll be able to read much more from this debate this morning - need a break now...
     
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    It is true that you can fool all the people some of the time; you can even fool some of the people all the time; but you can't fool all the people all the time.

    Abraham Lincoln
     
  10. snowathlete

    snowathlete

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    The latest reply is shorter and more focused, and that's a good thing. Less wriggle-room.
     
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  11. Holmsey

    Holmsey Senior Member

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    Or, bravery without strategy is stupidity.

    Here's hoping the C of M has a strategy, a view to how this will develop and a clear goal she is aiming for.
     
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  12. taniaaust1

    taniaaust1

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    I dont understand why people in our community feel like our advocates constantly need picking on. "they should of done this or that".. Our Advocates I think are doing the best they can and arent you or I, so wont do things how our ourselves would. If people want to keep picking on the advocates.. maybe they themselves should be out there doing more advocacy of whatever type they feel is correct. Rather then sitting back picking on whatever others are doing.
     
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  13. Valentijn

    Valentijn Activity Level: 3

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    The impression I get is that those critics of our advocates think we shouldn't be engaging in any advocacy at all. Or some undefined advocacy that they know is best, yet won't describe to anyone else.
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Haha! Right? No one has found the time to write it down in the now many hundred years? If Im consenting to get ruled by a government, I'd like a receipt for my rights please!

    Also the noble lords will forgive me if I find that (notwithstanding extant anti-democratic forces/influences in the US) having a House of Lords to be medieval and anti-democratic (though we are most blessed that Countess of Mar speaks for us there). But that's a discussion for another time and place.
     
  15. MishMash

    MishMash *****

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    Wessley is a lightening rod of buffoonery. When people like Lady Mar hit him he clangs very loudly. That will get people's attention. Doctors will be more inclined to take your side. Or just think about the issue of ME. These articles will be read by the physician and research communities. This exchange of letters is valuable indeed. It's when things go totally dormant that you really have to worry. Not a word about us spoken in journals, media.

    I wish we had an @$$ like Wessley, putting us down at high levels in this country. Back in the mid-90s, a researcher from the CDC came to speak at the CFIDS support group (remember when they used to call it that?) and he basically said the same thing to us as Wessley.

    He was just more clever and sly, and covered his tracks. He would not put himself on record putting us down as nut cases. Or needing to get more exercise. He made phoney promises of future research. That guy Reeves was the last hater of our illness. Or who would put himself on record in obvious terms.
     
  16. Stukindawski

    Stukindawski

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    I'd have a go :p

    One of the questions I'd of put to SW and perhaps more widely towards anyone who signed that letter to the independent is:-

    Which FOI requests would you consider to be harrassment?

    This is a key question because it forces this accusation to be pinned very clearly to a single mast and might serve to un-muddy the water around FOI requests which may well have been the intention all along given the vague FOI criticism to this point.

    So I could be called a critic I suppose. I have resolved to support every voting contest that comes up and write supportive letters, sign petitions, all of those things. I've embarked on some work that helps promote the advocacy projects of others. I've also personally donated money to projects despite having almost zero personal wealth and a minimal potential for ever storing any.

    Is a critic 'picking on' an advocate by inference? An advocate purports them-self to be representing the interests of patients. As far as the House of Lords goes, the Countess of Mar has assumed this (largely undemocratic) role. I do not doubt the sincerity or passion of her actions either. However, since I exercise almost no influence over how I am represented in this undemocratic forum, my only recourse is criticism. I could of course write to Lady Mar directly but, what better place to test my opinions and criticisms to make sure I do actually have something worth saying, than in a community of people going through the same thing as me, who in my opinion have an equal right to be represented fairly.

    I worry that we've had such a dearth of representation that criticism seems anathema when someone remotely seems to take up our cause. Perhaps there's a fear of scaring someone off and losing whatever influence is being conducted with the intent of being in our favour. I'd like to think Lady Mar being an experienced politician understands the contentious arena in which she resides.

    Is there not some irony in that, legitimate criticisms of SW and the BPS model are by vague accusations muddied amongst abusive behaviour while legitimate criticisms of our own advocates are muddied amongst the perception that any such action undermines ME/CFS advocacy.

    Some food for thought. I welcome and look forward to criticisms of this post!
     
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  17. Purple

    Purple Bundle of purpliness

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    :thumbsup:

    Hope everyone reading/contributing to this thread follows your example and votes in the current Aviva contest. It's a practical way we can help ourselves now! Link in my signature (when you click on the link, there is a video to coach you through the voting process).
     
  18. Firestormm

    Firestormm Guest

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    Tania. Please don't ever assume that they aren't out there doing their bit. Including me for that matter. If anyone - including me - 'advocates' in public and on the behalf of others with ME, they and I cannot expect not to be criticised!

    There is a clear perception among some especially on the internet - that every single thing they do and say - is great or fantastic and we should all run along like lemmings and jump off that same cliff.

    I had enough of this with the whole XMRV 'firestormm' and previously with other 'big deals'. This whole issue about 'threats' has the potentially to mark our card for good. Who do you think will be working hard to repair the damage? Someone else that's who.

    If Lady Mar or anyone else persist in driving a wedge between who are perceived to be researchers and clinicians working on behalf of sick people (whether or not you or I 'like' the individuals concerned or what they pursue) the perception will be:

    'Don't touch ME. It's not worth it.'

    How long has Wessely been hounded? 20, 30 years?! My attitude now is to look at this change in research direction from the MRC. To look at all the 'biomedical' science now being published around the world, and to think to myself - 'you know what, I really want my condition to be taken seriously and I don't want any scientist from any discipline or clinician thinking that we HATE them on principle and that they shouldn't engage with us!'
     
  19. DaiWelsh

    DaiWelsh

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    Too rough to contribute much, but just to say I agree that I see us as being at a point where much encouraging research seems to be moving forward, so I would rather any advocate of mine was "pushing the positive forward" rather than "pulling the negative back".

    I understand the frustration felt and how it becomes focused on SW (I myself feel it at times but I go back and forth based on the different information that comes out about who really said what). However, even if I was 100% convinced of the wrongs of SW I would be far less interested in "revenge" on him and far more on pushing effective research and treatment, be it of whatever arbitrary medical classification.

    And yes that would include psych if someone came up with an effective psych treatment (I personally don't feel they have yet). I believe research should be assigned based on plausibility of hypothesis and I personally do not see any merit in current BPS hypotheses wrt my condition, but in my limited understanding of the scientific process that does not allow for absolute exclusion of psych research, just affects the weighting of grant decisions. To argue from an absolutist viewpoint that all psych research should be stopped may seem reasonable as a lay person but IIUC it will not wash with scientists/funders en masse and they are the target audience.

    I also resent the implication that because I have no energy outside surviving to spend on advocacy I have no say in advocacy on my behalf. I am very grateful to those who make the time and energy to advocate for my condition, but I reserve the right to object if that advocacy is not representative of my views and wishes and yet is presented as such (last part is important).

    It is clearly not true that any advocacy is better than none (just as any research or treatment is not always better than none) and those who volunteer time and effort are not absolved of all accountability for their actions. Can someone explain that to the PTA at my son's school next ;)

    Anyway, I have enjoyed the quality of the discussion over recent days, I personally would like the forum to operate more regularly on this basis and hope the discussion will not cause polarisation or resentment. We all have views, they will differ, that does not mean there is a problem, quite the reverse. :hug:

    ETA: ofc all this good discussion of late may be contributing to my current slump, as I am reading it when I should be resting so also cuuuurse yoooou :mad: ;)
     
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  20. Merry

    Merry Senior Member

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    Let me suggest to you one advocacy idea that takes considerably less effort than posting in this thread:

    http://www.youtube.com/MEAwarenessPics

    At present we are voting in the Aviva contest in hopes of raising funds for biobank equipment for the Complex Chronic Diseases Clinic in Vancouver, Canada. See the fundraising forum for more information this contest and others. Consider joining the Facebook fundraising group to get the latest information on fundraising for ME/CFS charities.

    Firestormm, have you voted today?
     
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