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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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ME: bitterest row yet in a long saga

Discussion in 'General ME/CFS News' started by Omar88, Nov 25, 2012.

  1. Firestormm

    Firestormm Senior Member

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    David, look at the names attached to this letter. Look at them. This is in part - a large part I would suggest - about threats (assumed or otherwise), repeatedly being made to researchers or those involved in our condition. There are some names appended who are (still) concerned enough about our condition to be involved and some who are not involved at all.

    What part of the following letter - apart from the obvious, continuing and utterly pointless meme "where's the proof?" - deserves your derision? Would say that you disapprove of this acknowledgement being made in public by all those who have appended their names for example:

    We would not have had this happen I would argue even when I first received this diagnosis some 15 years ago. Now you can - and others certainly have and will continue to do so - spin this or interpret it as you see fit.

    But the central message, the public acknowledgement that our condition is SERIOUS and in need of IMPROVED TREATMENTS AND CARE and that RESEARCH is central - I mean what part of that don't you approve of? Your protest and scorn makes no sense to me.

    So people with this condition might not approve of the methods being used to get somewhere by those who are taking up the gauntlet and running with it. Such is our right. As it is their right to study and research. We have so few people interested in this condition - either in treating it in clinic or in researching it - that any more smacking the dead donkey in terms of repeatedly calling for 'proof' and not acknowledging that we are basically screwed, is completely bonkers.

    We now have a crap image due to some idiotic behaviour. That image needs rescuing. I've just done a trawl on the internet of the comments attached to this letter - and all of those (hardly any representative amount) posted are continuing in the same pointless fashion: demanding 'proof' and expressing scorn.

    This derision based on personalities, what is considered to be their beliefs, on their job titles for heaven's sake - which then translates into 'campaigns' and even to what might be considered as 'harassment' has to stop.

    Stephen Holgate is one of the names below. Stephen Holgate! This man was behind all the recent funding announced into "biomedical" research at the MRC! How many friggin' years have people with this condition been demanding 'proper' i.e. not behavioural, research?!

    There are other names here, that you casually slap, and refer to as 'Wessely's little boys and girls' - notable names, names you would not want to slap down or refer to collectively in that manner - had you but taken the time to see who they were. We need, I would argue, MORE people willing, attracted, to study this condition and the patients being diagnosed with it - not less.

    Do you honestly think that your selection of medics and scientists who are presumed by you to be 'ME-friendly' I suppose are going to collectively come together and, what, post some letter that refutes something in the letter below? What, pray, might they say that would meet your approval? I'm interested.

    A collective condemnation of Simon Wessely, perhaps? A deriding letter, strongly worded, which disassociates them or ME from any psychological involvement or from the involvement of psychologists and psychiatrists: 'No shrinks here!'

    Because it ain't gonna happen, it's counterproductive. These threats happened. And I would strongly suggest that people get over it, move along, and try to ensure it doesn't happen again.

    The letter from Independent on Sunday: http://www.independent.co.uk/voices...-online-postings-2-december-2012-8373777.html

    Letter written by:

    Herself of course the target of 'campaigns': http://forums.phoenixrising.me/inde...-brochure-threats-of-persecution.20704/unread

    The 1% differs from even the NICE Guideline. Temptation here is to allude to them meaning 'fatigue' or 'fatigue inducing conditions' I suppose. It's about time they sorted this out once and for all with some properly conducted epidemiology, based on the most likely-used criteria for ME in the UK perhaps the NICE criteria - I don't know.

    Amen. Hallelujah. And thank all the gods.

    It is bloody sad. Should never have happened. To ANYONE. And the issue concerned didn't, did it? No. It happened to several researchers, clinicians, and if you want to go there, anyone else who happens not to agree with the more vocal minority point of view at any one particular time or who is tarnished as a 'non-believer'. Nobody should be made to feel under threat. NOBODY. And especially not for doing their job and expressing an opinion.

    Yes it does. Whatever your personal opinion - my personal opinion - as to the direction research takes, who is involved, what the published paper is, how a treatment is applied, whatever - this kind of thing will put people off.

    And, because I let things like this get to me I admit willingly, it will affect what people think. Of me and of you. And I've had enough of being thought of as a 'yuppie' with flu, of a 'malingerer' etc. etc. and I really don't want to feel that I have to justify my sanity because of all this.

    If I could have any other condition I would. Who the hell wants a condition associated with all this crap?! We seem to attract labels and stigma's like flies. Even if they found some treatable 'biomedical' (heaven's forfend it was psychological) cause or an effective (more effective) treatment - it would have to fight against all this to ensure the treatment was rolled out across the country.

    It is a fear. Whether a realistic one I don't know - I have no professional experience in this field. I wonder if the banks are having trouble recruiting - I wonder if their personnel feel affected by the public hatred? Apparently they do. Maybe the analogy is too much - too harsh...

    Whether or not, you or I, have tried the treatments available - all of them including GET and CBT - and found them wanting, others might not have done. Have not done.And yet, "they don't have ME" for heaven's sake.

    And who knows? Maybe people have been discouraged enough not to get involved with studying our condition and maybe this has resulted in a greater swing towards psychological treatments in the past and presently - but I suspect it has more to do with other things than the regrettable behaviour of presumed patient minorities.

    Is it a reflection of this kind of collective 'exposure' that less and less 'medical' disciplines are involved actively in our treatment? Maybe not. Perhaps in part. I don't know. I just wish my own and other people's suffering would end and I don't really care myself how it ends - just that it does or is at least relieved in whatever way to a better extent than it is as present.

    And to do that we need experts to remain interested and focused and engaged. Not drawing attention to this kind of disgraceful behaviour repeatedly in the Press.

    Signatories to the letter:

    Holmsey likes this.
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It's such a weird mindset . At one level I think it must be the product of thermite strenght 'burning stupid' but then there's clearly some level purposeful construction going on. It's sort of tribal but who wants to be part of a tribe that is effectively self described as dim and vindictive ? And that's without acknowledging that the 'bad tribe' whoa re the object of derision are the very people we need on 'our side' to be able to change anything.

    The notion of 'ME-friendly' is clearly a two edge sword - one formerly appoved of 'researcher' has recently published against the fatwa of at least one patient perspective and is now a 'non person' in the view of some previous 'supporters'. And why would any self respecting health professional or researcher want to publicly (or privately) associate themselves with a grouping that is associated with allegations of harrassment ? As it is M.E/CFS friendly seems to boil down unreplicated privately funded ( and potentially self promoting ) research, pronouncements out of field of expertise, and superannuation. In fact rather similar to many crank medicine backwaters that are avoided by anyone with a functioning career and hope for actual medical progress.

    I do think it's amusing to see Montagnier mentioned - wonderfully ironic given that it is frequently contended that AIDS advocacy as enacted in the US was the nearly sole resolution of the global HIV problem, and this is what M.E/CFS must now emulate, which of course must leave Montagnier's efforts on HIV as some mere serendipity. Though heaven knows why anyone would want to associate with Montagnier now as he's clearly got Nobel Disease which makes the sufferer wholly unfit for public association.

    IVI
    Firestormm and Holmsey like this.
  3. David Egan

    David Egan Hermes33

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    Reply to Firestormm

    I agree with you that putting those names to the letter is a veiled threat to CFS researchers, doctors and patients. It is also an indirect attempt to make us look not credible. And can only be best answered by a letter from leading doctors and researchers, including Hooper

    As for the other points you make, let me explain and clarify a few points for you

    You stated "This serious illness needs improved treatments and care, and research is central to making this happen."
    What exactly do these people mean by research ? Have you figured it out yet ? it means psychiatric and psychological research which is utterly useless and does absolutely nothing to help us build a biological structure of causation and understand the biological dynamics of the illness, and this is the main reason that you have been ill for 15 years with ME / CFS and it will be another 15 years if this type of research continues by these type of people. And the word “serious” as used by these people means “serous psychiatric illness”.
    Are you suggesting we should be happy, over-joyed with the words of these psychiatrists. Have you not seen the way they twist words and twist everything to suit their agenda. Have you even read the web site www.cfs-ireland.com and the web site of ]Criona Wilson the mother of Sophia Mirza ??

    Your own statement “We now have a crap image due to some idiotic behaviour.” is extraordinary and shows incredible naievety on your part. ME / CFS had a crap image long before this letter due to the lies and corruption of wessely and others, and this my dear sir, was ably assisted by their apologists and tacit supporters. Their claim that CFS was a mental illness, “all in the head”, a non illness, had no biological basis, “yuppie flu”. There is still a very strong stimga associated with certain mental illnesses in western societies whether you like it or not. And they have attempted to put ME / CFS in this category. It was they who destroyed us in the press and media.

    Then you state “which then translates into 'campaigns' and even to what might be considered as 'harassment' has to stop.”. and “Such harassment risks undermining research, preventing the development of new treatments and discouraging specialist clinicians from entering the field.”
    Well let me explain something new to you, many ME / CFS patients have experienced harassment for years in the form of insults, mockery, prejudice, stigma, bullying, intimidation, harassment,and physical violence at the hands of the public who believe the crap that comes out of wessely’s and other’s mouths. You need to come out of your little bubble and see the harsh realities many ME / CFS patients have to face on a daily basis. Most of these ME / CFS patients are decent and honourable people and they have suffered terribly. So concern yourself with the harassment that they endured. Or maybe you don’t give a damn about them as they are the patients, the “little people” and are not professors and doctors and do not hold titles.

    You state “How many friggin' years have people with this condition been demanding 'proper' i.e. not behavioural, research?!” Well if wessely and his boys continue to have their way we will be waiting even longer. The few crumbs given to biomedical research in Britain last year does not compensate for the decades of neglect of research funding. And if wessely continues to get a good press, then these crumbs will be taken away and there will be no funding for biomedical research. Use your head !

    You state “There are other names here, that you casually slap, and refer to as 'Wessely's little boys and girls' - notable names, names you would not want to slap down or refer to collectively in that manner - had you but taken the time to see who they were.” If they sign a letter supporting wessely and his accomplices then they are with him – they are grown men and women and can make their own choices. And then you praise the people who signed the letter. How many ME / CFS patients have they cured ? Answer is none. Go to the web site and get the listing of the top 20 ME / CFS clinics in the world and see the doctors who have brought about thousands of ME / CFS patients through proper medical treatments.

    You state “Do you honestly think that your selection of medics and scientists who are presumed by you to be 'ME-friendly' I suppose are going to collectively come together and, what, post some letter that refutes something in the letter below? What, pray, might they say that would meet your approval? I” They are not presumed by me to be ME-friendly, I have researched their views on the subject, and I know their position. I presume nothing. And furthermore in reply to this snide, insulting comment by you, these doctors do not need my approval they know enough about the subject to slap wessely and his apologists down. They don’t have to crawl and bow for approval.

    You state “The 1% differs from even the NICE Guideline. Temptation here is to allude to them meaning 'fatigue' or 'fatigue inducing conditions' I suppose. It's about time they sorted this out once and for all with some properly conducted epidemiology, based on the most likely-used criteria for ME in the UK perhaps the NICE criteria - I don't know.” Well it seems that you don’t know a lot but you do a lot of talking or writing. Could I suggest that you visit www.cfs-ireland.com and start getting to know stuff. There is some very good diagnostic criteria mentioned on this web site and it also used the 1.2% figure from studies completed in the USA.
    Countrygirl, Min, maryb and 1 other person like this.
  4. David Egan

    David Egan Hermes33

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    One further point, I don't agree with or support the physical harassment and threats against people, and that includes (i) ME / CFS patients who are being tortured day and night as a result of psychiatry (ii) all carers and families who have suffered from this mistreatment (iii) all doctors (iv) all psychiatrists (v) all professors.
    Human respect and dignity is a circular flow, which can occasionally be blocked by greed, blind ambition, lies, corruption, conflicts of interest, incompetence, etc.. Start giving the ME / CFS patients the respect they deserve.

    And don't think me a fool, I graduated with first class honours from Oxford University, and have other graduate qualifications.
    natasa778, anniekim, Min and 2 others like this.
  5. Wildcat

    Wildcat Senior Member

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    The recent MRC funded research bears no relation to that proposed by Professor Holgate at the RSM Conference summer 2008. Many of us were sceptical that any of the research subjects proposed by Prof HOLGATE would be followed up, and they haven't been



    Its sad to see recently involved 'CFS' campaigners to be so totally uninformed of Professor Wessely's long historical media output and (professional) relationships with certain journalists.



    For example, Prof Wessely's association with UK Journalist Caroline Richmond, founder of Healthwatch, and much quoted by Prof Wessely's friend Elaine Showalter in the appalling 'Hystories' - 1997, portraying ME as a hysterical Millennium Plague comparable to belief in alien abduction.


    Ho Hum - in 1997 we were portrayed as hysterics on a par with Alien Abduction theorists - in 2012 we are portrayed as 'extremist militants' -

    In between, you could study CFS as a hysterical plague on MA literature courses at Birkbeck and Reading universities!!!


    .
    Ian McLachlan likes this.
  6. pollycbr125

    pollycbr125 Senior Member

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    blimey I thought id logged onto the wrong forum for the minute :eek: on reading some of the posts it was like id accidently stumbled across the Simon Wessely fan club :cautious:
    allyb, Adamskitutu, natasa778 and 2 others like this.
  7. Min

    Min Senior Member

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    Alas, it is becoming like that with posters from BS here to 'put us right'
    allyb and Wildcat like this.
  8. alex3619

    alex3619 Senior Member

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    There are two separate issues here. The first is attacks against Simon personally. These are inappropriate at best. The second is criticism of the "science" he produces and supports. If done rationally it cannot be out of bounds.

    To my way of thinking its not the "science" by Simon and others that many of us really object to. Its the non-scientific proliferation of these ideas beyond the evidence base all the while citing an evidence base that does not support what they are claiming. Many people see that as lies I am sure, though my perspective is more subtle than that. Add in apparent railroading of enquires (that is how some perceive it rightly or wrongly) and there is patient anger.

    This has been perceived as adversely affected generations of patient care in the UK, and to a lesser extent the world. Nobody knows the full impact. We are all guessing. I am aware of at least one old case locally of a patient who was taken as a child and forced to exercise. Eventually even some of the staff at the hospital refused to participate in that. People who know of such things are not happy with the system, period.

    I don't care what anyone does. Nobody will stop all the patients from making intemperate remarks about psychobabble. The emotions are too high and still being created and reinforced by the pattern of continuing treatment especially in the UK. I do not blame the patients. I understand why they feel like this. Given that we are always going to have negative comments that can be pulled out for display, or spun against us, for the most part we need to just ignore it and get on with advocacy. There is an argument though that we need to take such comments into account.

    This is about us doing advocacy our way and not over-reacting to press releases by those supporting CBT/GET. Debating this will not stop it. Arguing for one side or another doesn't help either. We need to get into details, specifics of articles, letters and other documents, and analyze them - then critique them publically.

    Bye, Alex
  9. Holmsey

    Holmsey Senior Member

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    BS?, I'm sure it's not b**l s**t, although there's a lot of that going around so 'posters from BS', please clarify for me?

    Don't think anyone is trying to put anyone right, and I certainly don't think there are any SW fans, just a good number of people who aren't prepared to be pack animals, they also seem focused on the big picture, and that picture doesn't include hate, exclusion or self destruction.

    Lets all be honest, launching into SW at every turn hasn't exactly worked out for us, we moan on and on about every article or comment, either by his hand or mentioning his name, and all that moaning does is load up the next article or comment while we remain in all respects that matter a big joke, a big angry joke I'll admit but a joke none the less.
    DaiWelsh likes this.
  10. barbc56

    barbc56 Senior Member

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    The site is Bad Science and it's quite informative.

    http://www.badscience.net/forum/

    Another great site is Science Based Medicine @ http://www.sciencebasedmedicine.org/ .

    Someone made the comment that the people from BS are over on this site. As far as I know, ATM there aren't too many posting here. In fact I joined PhoenixRising before I descoverd the BS forum.

    Barb C.:>)
  11. maryb

    maryb iherb code TAK122

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    Holmsey - Excuse me 'we remain in all respects that matter a big joke' how is that statement showing respect for people with ME. I'd expect it from some quarters including BS (thanks for the link Barb C.:>) I'm sure someone will appreciate it) but really that is not the case in many others - please speak for yourself.
    Min likes this.
  12. Wildcat

    Wildcat Senior Member

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    Is the acronym 'BS' intended to convey the phrase 'Bullshit' or meant to refer to 'Bad Science' ie the Ben Goldacre's 'Bad Science' Forum?

    .
    ukxmrv likes this.
  13. Wildcat

    Wildcat Senior Member

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    Barb56 wrote "the site is Bad Science and it's quite informative. http://www.badscience.net/forum/"




    Anyone who has followed the postings on the Bad Science Forum for a few years will agree that Ben Goldacre has allowed defamatory and extreme scatalogical material to become the normalised style of posting on the Bad Science Forum.


    Its pretty shocking that people who claim to be scientists and doctors indulge in such gross scatalogical denigration of those they don't agree with (and indulge in exceptional denigration of ME patients) as a 'normal' mode of communication on the Bad Science Forum.

    .

    .


    .

    .
    Min, Adamskitutu and ukxmrv like this.
  14. ukxmrv

    ukxmrv Senior Member

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    The Wessely supporters are using their criticism of patient methods of complaint (and this is everything from so called death threats to perfectly valid FOI requests) as a smokescreen for avoiding valid criticism of their methods.

    They refuse to engage on the perfectly reasonable concerns that patient have about their

    1. Support for the PACE trial

    2. Support for the NICE guideline

    4. Ties to insurance companies

    5. Long term blocking of research that goes against their interests

    6. Attempts to portray ME and CFS as psychological illnesses or "simply" fatigue

    7. Poor methods used in research that they carry out

    8. Unethical attempts to use the Lightning Process on children with CFS

    9. Poor treatment of individual patients at clinics that they run

    10. a failure to produce useful help for ME and CFS parients

    The question is what are we going to do about this?
    Bob, justy, anniekim and 5 others like this.
  15. Jarod

    Jarod Senior Member

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    planet earth
    Excellent question. Just brainstorming, here are some ideas:

    1) Contact government officials and try and get them to defund Science Media Centre. Taxpayer dollars going to that place is totally counter productive.

    2) I would suggest considering research in countries outside the western media/research juggernaut if you will. Malaysia, might be a good option for instance. They are not influenced by the typical sphere of western influence.

    3)I would also consider legal action, everybody doesn't have the same objectives and aren't playing by the same rules. I don't think government led research efforts have been productive, and funding these media centers is a prime example. Transhumanism is becoming a reality, seems kind of silly there is no test/treatments for ME/CF after decades(with a terribly small budget), while bioweapons research is getting a billions a year in funding.

    I mention bioweapons because our illnesses are here and a bigger threat than some bioweapon attack that "might", or might not happen.

    Figure 1. Civilian Biodefense Budget by Agency, FY2013 (in $millions).

    2012-06-12-biodeffunds_fig1.png
  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    You are entitled to your perspective but I really don't see what it has to do with M.E/CFS. That's not a request for elucidation.

    Re: the SMC. - As a legal entity it is registered as operating for charitable purposes - http://www.charity-commission.gov.u...teredCharityNumber=1140827&SubsidiaryNumber=0 with the bulk of its income recorded as donations . There's no data suggesting central government funding although any public service would be entitled to enter into a contract with SMC for provision of services or to support some specific initiative. Challenging the SMC's right to receive public funds would require either a challenge to the Charity Commission over the SMC's status or failures in the SMC's management, or it would involve challenges on a case by case basis of individual public services which held contractual relationships with the SMC.

    My question would be, even if one had the available data ( any of the possible challenges have to be backed by substantive evidence) what would be the benefit to M.E/CFS advocacy in being seen to do this ? Whatever you think about the SMC, it is strongly supported throughout the scientific and medical professions in the UK - by going after the SMC there would always be the potential to alienate hundreds, if not thousands of the very people we need to support M.E/CFS research. So why go down this route ?

    IVI
    DaiWelsh likes this.
  17. Sasha

    Sasha Fine, thank you

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    We have a chance this week to get Ampligen - an immune system drug - approved by the FDA. That would be a powerful way to leave the psych lobby in the dust.

    You can use the draft email provided and do it in a lot less time than it will have taken you to post a message on this thread.

    Details in my (rather shouty) signature! :)
  18. alex3619

    alex3619 Senior Member

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    May I point out that a lot of this is political debate? That the two sides are polarizing on this issue? That, very loosely, the two sides are liberal and conservative? Oh my gosh, how did that happen?
    allyb and Jarod like this.
  19. Firestormm

    Firestormm Senior Member

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    Well, and here I was composing a repartee to the replies above, and right on cue, here comes ME ACTION UK:

    http://www.meactionuk.org.uk/the-saga-of-science.htm

    And please let's just say at this point, as I don't have time to go into it at the moment, that the tacit acknowledgement - finally - of the threats being 'real' - is welcomed.

    There is more about what (presumably) Professor Hooper has written that I would endorse, although assigning those signatories on the letter to the 'psychosocial' camp of supporters - is wishful thinking on his part and wholly reflective of this presumed impasse and of the notion of 'opposing sides'. In my opinion of course.

    Still, I find myself agreeing with some of what he says. Not all. And I notice the inclusion of a quote from Klimas. Interesting as she is (as IVI inferred on this thread) being roasted for her support of - deep breath - GET....!!
    DaiWelsh likes this.
  20. natasa778

    natasa778 Senior Member

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    Excellent, thanks! Less talk more action.
    allyb and Wildcat like this.

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