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Lady Mar writes to Prof Wessely

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Merry

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Only if you will direct, Merry.
xx

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?

:lol: Great now my diabolical mind is thinking get this made into a movie TV or the Big screen. Show all the stuff he's said along with his contradictions and see if hes crazy enough to take legal action for defamation. How many of his papers, studies, trails, speeches, etc are on the public record?

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. . . .
 

snowathlete

Senior Member
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5,374
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@user9878 I think she's right and it is about economics, Wessley sold CBT and GET to the NHS who love the fact that they already have the workforce eg. too many physios,- they double as ME therapists. Its so easy for them thats why Wessley has been so successful, if his treatment cost many millions it wouldn't happen, it would be questioned and someone would come up with the answer, hang on isn't this a physical illness what are we doing here?

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.
 

Firestormm

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This is part of where I will express some confusion also Simon. You see I think she means the letter that was published in the Independent last Sunday; which implied I suppose that the article she and Prof Hooper, and Weir were cited in, was in some way further harassment of Wessely. He wasn't involved in that letter's production of course - though some may disagree.

[Shrug]. I am too preoccupied this morning to really get my head around it. I think there is a personal slight being assumed on Lady Mar's part from that letter alone, which has led to it all coming out. Gods alone know. Perhaps someone with their head screwed on will be able to articulate this better than I can?

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

http://www.meactionuk.org.uk/Simon-Wessely-to-Lady-Mar.htm
From: Wessely, Simon
Sent: 04 December 2012 17:23
To: MAR, Countess
Subject: your letter
Dear Lady Mar
I received your letter.

You state that ” I note from recent correspondence arising from the report in the Independent on Sunday on 25 November 2012, that you believe me as guilty of harassing you”.

You are referring to the letter published in the Independent on Sunday on Dec 2nd from 25 leading clinicians and academics that was a response to the article of 25th November.

I am not an author of that letter, and did not have sight of it before it was sent. I am however informed today by one of the authors that the letter published in the newspaper was not the same as the letter submitted, and that some editorial changes were made.

I can see that you might make the inference that you do from the published version, but I am told that was not in the original. I understand that a correction may be requested. It is anyway a little harsh to blame me for a letter that I neither saw nor signed.

I think we will have to differ on our recollections of our lunch engagement over ten years ago. What I am certain about however is that I have never written to you at your home address, and never called you on the telephone. I have no idea where you live, and no record of your phone number. I do however have the letter that I did write to you before the meeting, which are addressed to the House of Lords.

If you are interested I am happy to forward a copy, but I think that anyone reading it would conclude that it was written in a polite and respectful manner. If it was otherwise, I doubt that you would have agreed to meet me. I am afraid that I have not the slightest memory of what we ate or drank, nor who picked up the bill – oddly enough I usually have the reputation of being a rather generous host, but if my manners failed me back then, then I apologise.

If we are going over history, then I wonder what you now think of your speeches in the Upper House reported in Hansard 16 April 2002, and 22 Jan 2004. I attach the transcripts to refresh your memory.

[Edit: Hansard debate 16 April 2002: http://www.publications.parliament.uk/pa/ld200102/ldhansrd/vo020416/text/20416-19.htm#20416-19_head0 and 22 Jan 2004: http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm]

By now I hope you realize that you were seriously misquoting and misrepresenting me, although I suspect this was on the basis of inaccurate material provided to you by a third party, and that you would not have access to the relevant sources to be able to check for yourself.

If you are still in doubt, then you will find many of these highlighted in a statement on my website in which I point out just some of the significant distortions and misrepresentations in the material you were supplied with.

http://www.simonwessely.com/misund.html

Some of your language about me in that debate was also distinctly unparliamentary, and again I suspect was not your voice. I note that Lord Addington speaking after you remarked that that the debate “would make libel lawyers feel like dieters looking in a cake shop window” . I wonder if you in turn regret some of what you said that day, looking back in time as we are.

Yours sincerely
Professor Simon Wessely

Professor Simon Wessely
Vice Dean, Institute of Psychiatry
Head, Department of Psychological Medicine
Director, King’s Centre for Military Health Research
King’s College London

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:

From: MAR, Countess
Sent: 05 December 2012 18:40
To: 'Wessely, Simon'
Subject: RE: your letter
Dear Professor Wessely
Thank you for replying to my letter of 4 December 2012.

I found your response unsatisfactory in that you chose not to answer my questions and instead made derogatory comments about me, about which I will simply say that I am sorry your long-term memory is so selective. However, I can tell you that regarding the letter in the Independent on Sunday signed by 27 of your colleagues, I have received a very gracious apology from Professor White for any inference that may be drawn from it, which I have accepted.

I have no wish to enter into an unproductive and personalised correspondence with you because the issue of how people with ME are treated is far too important to be side-tracked by such diversions.

Instead I will ask you again: the data from the FINE and PACE trials strongly suggest that the psychosocial model of ME/CFS, which you first proposed, is wrong. These were large trials involving several hundred people and which cost the UK taxpayer several million pounds.

In the light of these results, do you still believe that ME/CFS is “perpetuated predominantly by dysfunctional beliefs and coping behaviours”?

If not, do you not have a duty to say this clearly, in plain language, so that other, more productive lines of research can be pursued?

When data suggest a model is wrong it must either be amended or discarded and the data is clear, so what is your intention? The harm that may result from pursuing wrong ideas in medicine cannot be overstated.

In your reply you ask if I regret some of the things I said about you. I have seen and heard nothing that alters what I said in my speech of 16 April 2002 and anything I might have said on the subject subsequently.

What I said does not hold a candle to the scorn and derision that you have poured on people with ME and on the doctors who do not subscribe to the psychosocial model.

Yours sincerely
Mar

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 :)
 
Messages
95
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.
 

Firestormm

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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.

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.
 
Messages
95
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.

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.
 

Firestormm

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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 an unfortunate fact that, despite a lot of research and speculation, we do not yet know the cause or causes of chronic fatigue syndrome or myalgic encephalomyelitis—I hope that noble Lords will not mind if I call it CFS/ME. But the important point is that, whatever the cause, there is no doubt that it is a serious and debilitating disorder, and patients suffer severely from it. I am sure that the noble Countess, Lady Mar, will agree with that, at least.

CFS/ME is not alone in being baffling. We do not know the cause of most cancers and many inflammatory diseases, from arthritis to colitis, from asthma to Alzheimer's, but that lack of knowledge has not stopped us seeking the best forms of treatment that we can muster. Indeed, many of those diseases are treated well, and some are cured, although we do not know the cause. But we seem to have got ourselves into a semantic argument that, to all intents and purposes, is irrelevant to what patients need and want. They want treatment and cure, and need more research into potential causes so that more accurate diagnoses can be made and better treatments developed. Meanwhile, they want the best treatments currently available.

In the old days, when we did not know the cause of a disease, we named it after a doctor or patient—for example, Parkinson's disease or Crohn's disease. If noble Lords will forgive me, I am reminded of the story of the little boy who, when asked what his dog's name was, replied, "I do not know his name, but we call him Rover". Perhaps we would do better to call CFS/ME "Mar's disease" or even "Wessely's disease". As we do not know the cause, I prefer to refer to it as chronic


22 Jan 2004 : Column 1185

fatigue syndrome, because at least the term describes how patients feel.

Myalgic encephalomyelitis suggests that there is an inflammation of the brain, when there is no evidence that patients' brains are any more inflamed than anyone else's. I certainly would not focus any arguments on the issue. Indeed, most authorities now seem content with the term CFS/ME—sitting on the fence.

Be that as it may, most of those in the field who have studied the disease agree that, as with every other illness, there is likely to be a mixture of physical and psychological disturbances. To deny that patients may be depressed when they have a chronic long-term debilitating illness seems to fly in the face of experience. Just as it would be unwarranted to deny a depressed patient with cancer or rheumatoid arthritis an anti-depressant, so it would be unwarranted to deny an anti-depressant to a patient with CFS/ME who is also depressed. It is quite different from suggesting that depression is the cause, because it clearly is not.

I hope that noble Lords will forgive me for going on about the issue, but there is a tendency to believe that it is somehow a betrayal of patients even to admit a psychiatric component in the suffering of patients with CFS/ME.

I cannot subscribe to that view because I know that there is always a psychological component in every illness, even if it is only a response to that illness. That is not to deny that there may be physical components in CFS/ME—almost certainly there is—but the problem is that, at present, we do not know what it is, or what they are.

Efforts to uncover an inflammatory, infective or immunological cause have given tempting glimpses, but nothing clear has emerged. Clearly, more research is needed. Perhaps equally unfortunately, no new treatments based purely on those types of possible causes, and that make any difference, have emerged. Antibiotics, antivirals, vitamins, supplements, anti-inflammatory drugs and even steroids do nothing unless they are specifically indicated.

Despite anecdotes to the contrary, I am afraid that the only treatments that have shown any benefit in large-scale carefully controlled clinical trials are: cognitive behaviour therapy, which involves a careful, encouraging confidence-building effort with slowly increasing exercise based on what patients can achieve, without symptoms at the time; and antidepressants, if the patient is also depressed—it is no wonder that many are. Those are currently the only treatments shown to be effective. Many—but, unfortunately, not all—patients are helped by that approach.

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...
 

Holmsey

Senior Member
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286
Location
Scotland, UK
Morning Stu,

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.

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.
 

taniaaust1

Senior Member
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13,054
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Sth Australia
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.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
But the House of Lords doesn't actually pass legislation any more...does it? Trying to figure out how the UK government works makes my head hurt. What on earth is an "unwritten constitution"??
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.
 
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445
Location
Georgia
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.
 
Messages
95
The impression I get is that those critics 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.

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!
 

Purple

Bundle of purpliness
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489
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.

: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).
 

Firestormm

Senior Member
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5,055
Location
Cornwall England
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.

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!'
 
Messages
57
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: ;)
 

Merry

Senior Member
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Location
Columbus, Ohio, USA
I have no energy outside surviving to spend on advocacy

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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