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Why few dare tackle the psychology of ME

barbc56

Senior Member
Messages
3,657
I want to make it perfectly clear that the following is my opinion and I am NOT talking about everyone in our community nor all posts on this thread. I am speaking about my general unease about some of our communitie's actions and specifically about the Pembleton article. The following is my perspective.

While I feel Pembletons article to be distasteful, and the issues raised by him are indeed troublesome, I think we need to focus our energies on this issue in a different way.

Unfortunately, the very same criticisms of Pembleton are, IMHO, being used by some posters on this thread.

Sweeping generalization such as all doctor's are stupid. Scientists are incompetent and there is a conspiracy behind everything that happens..Conspiracy theories which run amuck and are not backed up by fact but are opinions. Nothing wrong with opinions but state it as such. Asking patients if they really are sick, is not acceptable. Using the sick card to the extent it gets tiresome and only makes readers eyes glaze over is not conducive to motivate others to read. Well, he probably didn't get that much hate mail. Even posts that are of a violent nature appear in this thread.

All this under the guise that yes we are mad about this DD and that justifies doing unconscionable things. What does this say of us? It says that we are condoning inappropriate acts for us and at the same time condemning others for doing the same thing. Aggression, instead of assertiveness..

Yes,I am sick and tired of this DD and how we are treated. I do want things to change. The issues are very real. It's the way some people are reacting that I find troublesome.

Whlie anger can motivate action for change, it's when that anger controls us that we become unproductive. Choose your behavior, prioritize what we need to focus on instead of reacting in a knee jerk way. I understand the anger, I have it myself.

Unfortunately, what could have sparked a healthy discussion (or even debate) regarding the article as well as other issues around me/cfs,we have devolved into an “us vs. them” mentality. The comments shared weren’t anything new. In fact, they continue to rehash arguments that seem to be age-old.

I wouldn't be surprised if this is the reaction Pembleton had in mind all along. The more controversy, the more readers.

There's only one sentence in Pembleton's article that I liked:

“The minority of militant sufferers are doing the majority a tremendous disservice by scaring off doctors and scientists from working in the area”

If we don't speak out against these militants, just like we should be speaking out to those reducing our illness to psychological manifectations, then we are perpetuating and walking into the very inaccurate and damaging stereotype we are trying to avoid.

Barb C.:>)
 
Messages
13,774
Unfortunately, the very same criticisms of Pembleton are, IMHO, are being used by some posters on this thread.

Sweeping generalization such as all doctor's are stupid. Scientists are incompetent and there is a conspiracy behind everything that happens..Conspiracy theories which run amuck and are not backed up by fact but are opinions. Nothing wrong with opinions but state it as such.


One think that is a problem about forums where people have a lot of shared experiences is that they can encourage us to slip in to a 'slang' which is misleading to others. It used to really bug me when people would speak condemningly of CBT, without making it clear that they were talking about a specific approach to CBT, rather than all approaches. Now that I have a better understanding of the culture here, I can find myself slipping in to those sorts of short-hands, knowing that the people I'm speaking to will understand. In the same way, I expect that statements like 'doctors are stupid' could be left to stand in contexts where it was clear that it meant particular sorts of doctors are stupid in a particular way.

This is potentially problematic, and probably should be something we try to avoid. There could also be an emotional response to feeling a part of a group being unfairly attacked, which makes one less committed to treating those outside the group fairly. Or maybe it just leads to one feeling irritable.

Having said all that, I don't remember any examples of that in this thread. Did I just auto-translate sub-consciously? We've lost our 'search thread' option, so I'd struggle to track these examples down.

Whlie anger can motivate action for change, it's when that anger controls us that we become unproductive. Choose your behavior, prioritize what we need to focus on instead of reacting in a knee jerk way. I understand the anger, I have it myself.

But the dark side of the Force is so powerful!

Unfortunately, what could have sparked a healthy discussion (or even debate) regarding the article as well as other issues around me/cfs,we have devolved into an “us vs. them” mentality. The comments shared weren’t anything new. In fact, they continue to rehash arguments that seem to be age-old.

I don't think it ever could have become a healthy discussion. re: old arguments: That reminds me of criticism of people like Dawkins for just re-hashing arguments from Bertrand Russell - if the arguments haven't been rebutted, then they're worth repeating. If they've been rebutted, it's not their age that's the problem, it's the fact that they've been shown to be wrong.


I wouldn't be surprised if this is the reaction Pembleton had in mind all along. The more controversy, the more readers.

I think that's probably right.

There's only one sentence in Pembleton's article that I liked:

“The minority of militant sufferers are doing the majority a tremendous disservice by scaring off doctors and scientists from working in the area”

I really don't know specifically who he's talking about though. From what we've seen of him this time, it seems like he just doesn't like being told he's wrong.

Generally the problem I have with other patients is that I think they're wrong about something. That they're misinformed, or their arguments are weak, and so on. I've come across lots of patients who are REALLY angry about the way that they've been treated, but often when I speak to them, a lot of their anger seems justified. Even if the way they express it is harmful to the way people think of CFS, I don't really feel that I have any particular business condemning them for it if it just involves ranting on the internet. I'll try to point out when I disagree and explain why (although I do seem to have less willing to do so recently... I'm tired and busy!), but I can't pretend that they're wrong to be angry.

There was a time when people seemed unreasonably angry with [I've forgotten her name - the lady virologist who worked with Wessely on the first negative XMRV study], and I did think that was getting odd and unpleasant. I did a few little posts semi-standing up for her, but wish that I'd said more about that. That's a bit of a regret.

I guess the trouble is that people are unlikely to post on the forum about sending some crazy threatening e-mail off. But equally, a lot of those claiming to be 'intimidated' also seem rather sensationalist in their claims, or to have a history of spinning the evidence around CFS. I want to know exactly what it is I'm being asked to speak out against, rather than just doing it symbolically, as part of a ritual to present myself as a 'non-militant' person. I'd also like to know what sort of protests those complaining about 'militancy' think it is appropriate for patients to take part in to express their concern about the way in which CFS has been treated. Anything?

I was only planning to write a couple of lines.[/quote]
 

biophile

Places I'd rather be.
Messages
8,977
I feel like switching back to my Kratos avatar for a while.

I am usually too unwell to play computer games, but one of my favourites was the God of War series on PS3.

To cut a rather long and complicated story of vengeance very short, Kratos is an angry and disturbed character who is in part an author of his own misfortune (stereotype of the ME militant), however he is also a highly skilled warrior who, after being severely jilted by the corrupt status quo powers that be, brings down the entire Olympian pantheon through sheer determination. Afterwards, the human species was able to prosper without a corrupt divinity.

I use it as both an utter mockery of the stereotype of, and a celebration of those identified as, so-called ME militants for questioning status quo psychobabble, who may eventually help to bring the psychobabble house of cards down (non-violently) because of their skills and determination, allowing science to prosper without the psychobabble stranglehold.

I have never engaged in militancy nor condoned violent approaches to advocacy, yet I have indirectly been identified as such for critiquing the PACE Trial, questioning the cognitive behavioural model of ME/CFS, and being skeptical abut simplistic psycho>somatic explanations. Might as well own it with a little sarcasm now and then.
 

biophile

Places I'd rather be.
Messages
8,977
Wessely has ridiculed and taken great offense at being compared to a certain Nazi (http://en.wikipedia.org/wiki/Josef_Mengele) who was into human experimentation and responsible for much suffering and death, and according to Wessely, may have even killed his grandparents. I did a quick Google search and found a small handful of such references, no doubt because of Wessely's experimentation on ME/CFS, which according to a significant number of patients and advocates, has caused or prolonged suffering or even death through neglect or inappropriate treatments.

When commenting on supposed harassment and death threats, Wessely compares his situation to worse than a literal warzone (Afghanistan) and implies that it is more dangerous to agitate his critics than to agitate those who have killed others for insulting the Prophet Mohammed. Wessely loves allusions and guilt by association, his papers are full of them. If Wessely encourages the conflation of people like me with radical violent extremism for merely questioning his claims, then I do not really feel motivated to defend him from claims that he is comparable to Mengele.
 

Sean

Senior Member
Messages
7,378
All this media crap we are seeing of late is the increasingly desperate post-PACE propaganda campaign to salvage whatever they can from their failed ideology and the crumbling empire that was built upon it.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Full opinion piece. Over 200 comments thus far. Just so we get this straight. Damien and co. get off on this stuff. They live to write provocative pieces. They thrive on expressions of outrage. Ergo they shouldn't be taken seriously and they will not 'change their ways' so I wouldn't even bother trying to - not that this will prevent certain 'posters' from deluging the comments with their own versions of the 'truth'.

As I have said before on this thread. I have no problem with (how could I?) people who have this condition expressing their own personal experiences and feelings when blogs such as this stir up feeling (as they are precisely designed to do).

My condemnation occurs when certain people repeatedly post multiple comments and post in an authoritative 'representative of the community' way. I especially have a deep concern for people who don't even themselves have the condition but have self-appointed themselves as advocates and similarly stuff such blogs and twitter feeds with their own interpretations of what is wrong with other people.

These things are designed (I repeat) to be inflammatory. Read some of the comments. Most times I don't even bother with his nonsense unless I wish for amusement and to 'tut tut' over 'what has the world come to' when this sort of 'freedom of speech' is permitted.

Responding in an outraged tone, or even attempting to 'educate' this editor are wasted efforts in my humble opine. Mind you it won't (can't) stop some people from trying and I genuinely wish them well. Those I do not wish well and indeed wish would desist are those (two?) individuals who dominated the original opinion piece by Pemberton.

Trouble is I know I am whistling in the wind (again). Idiots.

The article you’re about to read will almost certainly be referred to the Press Complaints Commission. I’ll explain why later. Anyway, here goes.

This week I noticed that the Telegraph’s medical columnist, Dr Max Pemberton, was being horribly slagged off on Twitter. His crime? He’d commented on the fact that scientists at Columbia University had found no evidence that two specific viruses were linked to ME, which Max described (choosing his words carefully) as “the condition characterised by extreme fatigue and muscle pain”.

The Columbia finding was a terrible blow to many ME sufferers, who hoped that these viruses were the Holy Grail of a biological cause for their illness. But, as Max explained, it wasn’t widely reported because medical journalists are frightened of the militant wing of the ME lobby.

The previous time Max wrote about ME, presenting the majority view of scientists who think the condition has a psychological component, he was targeted by people displaying what he calls “an astounding degree of paranoia and obsession”. Every article about ME provokes complaints to the PCC, but in his case those were just the start. Sinister threats and photos of Max’s home were posted online.

This is a tricky subject for me, because a colleague has been diagnosed with ME. He’s seriously ill: the breakdown of one part of his body after another cannot be explained by psychosomatic fatigue. On the other hand, I suspect that his condition has only been described as ME because doctors haven’t pinned down what’s going on.

In contrast, medical science has no great difficulty explaining what’s wrong with most people diagnosed, or self-diagnosed, with ME. Their brains create a debilitating fatigue and pain that often correlates with certain personality traits. For example, there’s an overlap between ME and eating disorders.

Once you start talking about overlaps you’re in dangerous territory. In 1997, the feminist historian Elaine Showalter wrote a brave and brilliant book called Hystories: Hysterical Epidemics and Modern Culture. She suggested that “psychogenic diseases” such as ME and Gulf War Syndrome had something in common with the confabulated memories of “Ritual Satanic Abuse” and alien abduction.

Showalter was vilified for joining the dots between mysterious spasms of anxiety – but imagine the vicious treatment she’d receive if she’d written Hystories in the age of Twitter. As the internet sceptic Evgeny Morozov argues, social media have “overmobilised” lobby groups, whether they’re Russian neofascists, climate change activists or medical conspiracy theorists.

You might say that the internet is simply enabling the free association of like-minded people. But ask yourself what like-minded people do when they connect online. They gang up on “the enemy”, whether it be a scientist exploding the myths of homeopathy or supporters of a rival football team.

In other words, much of the Twitter “conversation” is more concerned with shouting people down than opening up debate. Also, a lot of that shouting-down is organised and coordinated with an eye to twisting politicians’ arms and feeding narratives to right-on media.

We’ll see how this plays out. But overmobilising is already damaging the very people it’s meant to help. Doctors used to regard chronic fatigue as an exciting field of research. No longer. Why? Because, to quote one of them, “it’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade”.

The original 'Britannia’ still rules
If you haven’t heard the original Rule, Britannia!, let me urge you to do so as soon as possible. That lovely composer Thomas Arne (whose name escaped David Cameron on Letterman) originally wrote the music as the final chorus of his 1740 masque King Alfred. Played on period instruments, with baroque ornaments and delicate orchestral ritornello, it’s far more stirring than the puffed-up, dumbed-down Proms version. No wonder Handel admired the piece. Also recommended: an ingenious set of variations on the theme by Ludwig van Beethoven, who after his flirtation with Napoleon became an obsessive Anglophile.

Gaffes that fall on deaf ears
Earlier this week, friends of Andrew Mitchell were suggesting that he swore at “f—— plods” rather than “plebs”. As damage limitation goes, it isn’t convincing. Only a particular breed of short-tempered snob uses the word “pleb”, and the Chief Whip fits the bill precisely. Even if he didn’t say it, anyone who knows him can imagine him doing so. (I’ve never met the man, but I’ve also never met anyone with a good word to say about him.)
It’s always funny when panicked spokesmen try to pretend that an offensive gaffe was misheard. During a visit to America in the Seventies, Princess Margaret was overheard describing the Irish as “like pigs”. Nonsense, said sources close to HRH: she had merely observed in a light-hearted fashion that the Irish “like jigs”.

Tripping down memory lane
There’s been quite a fuss about Jon Snow’s Channel 4 programme Drugs Live, in which people have taken Ecstasy under the supervision of publicity junkie Prof David Nutt. But such experiments were surprisingly common in postwar America, when Cary Grant and the founder of AA, Bill Wilson, dropped copious amounts of acid prescribed by doctors. (AA members don’t like being reminded about Bill W’s tripping.)

In 1961, Daniel Breslaw published an account of taking magic mushrooms at Harvard. He did not emerge with his dignity intact. While under the influence, he and his friends played a game called “Guinee-Genug”, which consisted of repeating the words in a variety of inflections. At the time, he relates, it made chess seem “childishly simple”. Alas, Ecstasy provokes no such inventiveness. Which is a shame, because I’d love to watch a certain smarmy old Left-wing newsreader gibbering away under the glare of the cameras.

And the preening prize goes to…
As I wrote last week, I’ve become obsessed with King Lear. So I’ve been reading articles about the play and made a hilarious discovery: the most clod-footed columnist in Fleet Street. He’s called Amol Rajan and he writes (of course) for the Independent. He’s just seen Jonathan Pryce at the Almeida. He begins: “This column is not usually a province of literary criticism; but on the grounds that every social problem is in some sense negotiated by the play, I hope you’ll forgive me for the following reflections…” I’ll spare you the “reflections”; let’s just say that you’d need some pretty hefty grade inflation to secure Rajan a pass at GCSE English. But if there were a Nobel prize for preening, he’d be a shoo-in. Comedy gold.

Edit:

Remember in the past when the 'death threats' were en vogue? Of course. We all do. At that time attempts to say that this 'harassment' (my word) was limited to a 'handful' (I believe was one word coined at the time) of 'extremists' and not representative of the behaviour of the majority - were slammed by those who presumably see themselves as extremists.

Similarly, this opinion piece takes a quote applied to 'militants' and yet - working my way through the comments - there are attempts to suggest that this piece is denigrating 'the community' at large. You see this is where I have a problem.

As I said previously on this thread - aside for the moment that this is an opinion piece and not worth my time - when it comes to claims of 'harassment' or 'threats' or 'hounding' or being 'horribly slagged off' or whatever - there are those who seem to think that rather than condemn the activity of those who persist in this behaviour (I mean what does it cost 'us' to do that?), or to simply leave well alone; they would rather defend 'them' (themselves?) by claiming their views, their anger, their very justification for this behaviour is shared by their 'community'.

It is interesting, reading the comments thus far, that predominantly one individual, and in my opinion of course is again doing precisely that. I don't personally see this opinion piece or the headline as insulting to me or to those I know who are genuinely affected by a debilitating condition that is termed ME/CFS (or whatever you prefer). This and other opinion pieces and discussions aired on e.g. the BBC last year were talking about the threats themselves and those who made them termed in this case 'militants'.

Kindly explain to me how/why I should be offended? There are always going to be idiots who take things too far. Cross the line. Whose behaviour offends me and others. And yet 'we' never speak out about them do we? And any articles/discussions that talk about 'threats' perceived or otherwise, that lead to biased, unfair, untrue, opinion pieces lead 'us' to take offence and for 'them' to invoke the authority of the 'community'. Authority that they do not have. They are representative of nobody but themselves. Just as I am and you are. So why shouldn't I be offended by the actions of these people?

They speak in terms of 'we' and with some assumed 'god-given' authority on behalf of me? How dare they. Why can't everyone make it clear that it is their own belief and opinion that is being stated - and cut the crap about 'knowing' what's what about this condition? Nobody knows dick. If there were any certainties beyond the obvious we wouldn't require 'defenders' like these - would we?

Opinion pieces posted on even newspaper blogs are not - I suggest - in circumstances like those dangled by Pemberton and this latest one - even worth bothering with. If certain people hadn't done so in the way they did with Pemberton - Thompson would not have felt able to post what he did.

Is all publicity, good publicity?
 

Shell

Senior Member
Messages
477
Location
England
I tend to try and think the best of people if possible, but with all due consideration I find Damian Thompson to be an utter wazzuck. (Good Black Country word that).
 
Messages
646
Trouble is I am know I am whistling in the wind (again). Idiots.

Poke the ants nest. The ants oblige by getting angry - "Ha ha look at all those silly ants. I told you they were silly, how cleverly I proved my point ! " I guess this must be the model for M.E liberationism

IVI (disppearing to the tune of Colonel Bogey in a force 9)
 

Enid

Senior Member
Messages
3,309
Location
UK
I saw that on a rare sortie into the DT (we no longer take) - and posted "how much more ridiculous can you get" I noted too that he was once described by The Church Times as a "blood crazed ferret". Enough said.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Poke the ants nest. The ants oblige by getting angry - "Ha ha look at all those silly ants. I told you they were silly, how cleverly I proved my point ! " I guess this must be the model for M.E liberationism

IVI (disppearing to the tune of Colonel Bogey in a force 9)

Gods IVI. The whole film? Thanks buddy. I love Antz. Just the thing to take my 'minds' off all this crap :eek: :rofl:
 

currer

Senior Member
Messages
1,409
The high profile negative articles in the press are published in order to dissuade new doctors from developing a research interest in ME. That is the function of such articles and the reason for the exaggerated claims of "abuse from patients"

Someone does not wish interest to grow in researching the causes of ME in the UK.

However I do think it correct to respond to such misleading articles. I have not seen any "abusive" comments.
 

Enid

Senior Member
Messages
3,309
Location
UK
Yes to a certain extent I agree currer and resembling playground childishness at worst - "you've hurt my mates". Reason long since disappeared. So a tit for tat from these playground bullies.
 

natasa778

Senior Member
Messages
1,774
However I do think it correct to respond to such misleading articles. I have not seen any "abusive" comments.

Absolutely. And not even for the reason of trying to educate the author or to prove him wrong (waste of time imo) but to educate and show the other side of coin to the 'neutral reader'.

I don't know about others here but when I come across an online article that peaks my interest, and especially if I don't know much about subject in question, I always try and read through comments as much as time allows to get a wider perspective.

It is this 'wider perspective' imo to have in mind when replying to such articles - that there might be people out there reading it who are genuinely interested in hearing more ...
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
The high profile negative articles in the press are published in order to dissuade new doctors from developing a research interest in ME. That is the function of such articles and the reason for the exaggerated claims of "abuse from patients"

I am sorry but this is what you would like to believe but is nonsense. Are you suggesting that this latest opinion piece is 'high profile'? It is sensationalism at it's finest Currer and reflective of nothing but the author's lust for stirring already stirred pots.

Someone does not wish interest to grow in researching the causes of ME in the UK.

I wondered how long before you started on yet another personal 'conspiracy' reason. Let me guess as to the identity of the 'who'. Is it Dr Evil sending his pawn mini ME out into the world to undermine any 'legitimacy' that dare threatens his pharmaceutical empire?

Sorry. I really am. I am taking the piss a little but having now read several pages of comment attached to this latest crap from Thompson - I need some levity.

Just got to the exchange between the two most frequent air mile posters and a chap whose cousin's daughter has leukaemia. You read that? Of all the conversation to get stuck into - that is most definitely not one of them: what will be seen as the olde and pointless: my disease is worse than yours and this little girl is clearly not as demanding as you lot are' argument.

Why-oh-why do people insist on engaging with anything and everything that is said on a bloody comments page when the authors deemed to 'offend' could themselves be taking the piss? To do so in such a fashion as is being displayed by non-patient and proclaimed patient alike - is in my own view - suggestive of manic behaviour.

And now we have been seeing one of those said individuals promoting her view that Lipkin was positive of an association - for heaven's sake. I mean. This is really getting bloody ridiculous now. If it was a single comment it wouldn't be so bad would it and I wouldn't feel the need to say what I am - but it's not. The same two people are literally 'all over the place' both in what they are saying - slamming the points of others - and in the frequency of their postings (not to mention the times of them).

Still. I must remember that each to their own I guess. Except I don't have to do I? Because these fools are making a mountain out of a mole hill and the created stigma will continue to grow so long as they keep at it.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Just to comment, I am fairly sure ScienceME is an old PR member who left some time ago. For those who have identified him, are you really surprised? Having said that, some of his comments are very good. Just because some are over the top does not mean that all are. I am not sure who the second person is who is causing the fuss, Firestormm. There are several candidates.

People get angry. We have no control over that. The only way to "control" anger is to give it direction, a positive purpose. In other words, show some advocacy leadership and do something that people get behind. While I think we can do this, so far most advocacy has done little, despite huge efforts from the small numbers involved. We simply need more people doing more constructive things. That would attract some of the angry responders and put it into some focussed effort.

Figuring out what those constructive advocacy efforts might be is worth more attention than media hype, though I still think something has to be said against these hyperbolic and erroneous media pieces. If nobody responded many would think hey, the reporter nailed it, they can't respond. It would also be very damaging to ignore it.

Bye, Alex
 
Messages
13,774
I agreed with a lot of what you said, but...

Remember in the past when the 'death threats' were en vogue? Of course. We all do. At that time attempts to say that this 'harassment' (my word) was limited to a 'handful' (I believe was one word coined at the time) of 'extremists' and not representative of the behaviour of the majority - were slammed by those who presumably see themselves as extremists.

Similarly, this opinion piece takes a quote applied to 'militants' and yet - working my way through the comments - there are attempts to suggest that this piece is denigrating 'the community' at large. You see this is where I have a problem.

As I said previously on this thread - aside for the moment that this is an opinion piece and not worth my time - when it comes to claims of 'harassment' or 'threats' or 'hounding' or being 'horribly slagged off' or whatever - there are those who seem to think that rather than condemn the activity of those who persist in this behaviour (I mean what does it cost 'us' to do that?), or to simply leave well alone; they would rather defend 'them' (themselves?) by claiming their views, their anger, their very justification for this behaviour is shared by their 'community'.

...

Kindly explain to me how/why I should be offended? There are always going to be idiots who take things too far. Cross the line. Whose behaviour offends me and others. And yet 'we' never speak out about them do we? And any articles/discussions that talk about 'threats' perceived or otherwise, that lead to biased, unfair, untrue, opinion pieces lead 'us' to take offence and for 'them' to invoke the authority of the 'community'. Authority that they do not have. They are representative of nobody but themselves. Just as I am and you are. So why shouldn't I be offended by the actions of these people?

When I looked at the comments on twitter, and I thought they were fine. To some extent, he deserved to get slagged off - his claim that it was accurate to say PACE showed 1/3 patients recovered following CBT/GET because the PCC approved of it was just pathetic. I just don't see anger at that as militancy which should be condemned.

That's one of the reasons why I cannot just think 'Oh, it's only crazy, dangerous militants they're complaining about': they seem to be including anyone critical of the way the psychosocial approach to CFS has been promoted and conducted. Freedom of Information requests relating to PACE were being classed as harassment, when they've still refused to release the true figures for 'recovery' and we're continuing to have to put up with the dishonest claims being made about this - I'm entirely supportive of attempts to get access to as much data as we can, and if that marks me out as a militant, then I must accept that I am.

I also completely disagree with the notion that patients should be grateful for the work of any researcher involved with the condition, or that it's bad to want certain researchers to leave - there is a lot of bad CFS work, and a lot of spin and manipulation of results. I think it would be a wonderful think if those responsible for this were driven from the field by the response their quackery generates.

David Irving dug up some interesting original documents, and discovered valuable new data, but when he was revealed to have misrepresented and spun other data and documents, he was driven from the field. Quite rightly. Researchers should not have the academic freedom to churn out misleading work.

I'm happy to condemn people sending death threats, but as the only example we were given of this is someone sending an e-mail which included the phrase "You will pay", I can't pretend this is a serious problem. I hope that those responsible for the poor work which has caused such trouble with CFS will have to pay some price for it.

If I was to see anyone here encourage the sending of death-threats, then I'd certainly intervene, but that's never happened. I'm certainly not interested in defending all CFS patients, or acting as if we're some unique group of saints who only ever behave virtuously - I expect that the difficult circumstances which surround CFS would be likely to mean that people would often behave less well than usual. But I do not want to play along with a narrative which presents criticism of researchers, FOI requests, or disagreeing with bad journalism - basically any opposition to the views of those with power - as unreasonable militancy. A lot of it does seem to be founded upon a 'know thy place' mentality which is just not acceptable to me.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Twitter Aikido for --
'It's safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade'
 
It's safer to insult chronically sick people than to contradict the ME Psychology brigade
Mark Hurst
@
HurstAKA
Stand Up Comic until I got cfs/me. Now a Lie Down Comic
London
Pure provocation,after a little chat with his Telegraph chum who got stick for his 'mental illness' article. It really is unethical

Because what it looks like to many, is joining in the Gvnmnt led demonizing of the sick and ME patients are the easiest targets
 
Just using their status to bad mouth and give a false perspective of illness ruining lives. It's quite quite disgusting.
kogvos ?@kog_vos </kog_vos>

I'm off to bed but doubt I'll sleep given possibilty of impending attack by the 'ME Brigade' (copyright: Daily Telegraph)>
Retweeted by
Mark Hurst </HurstAKA>

They say they're ill, but then how can they press their computer keys to send tweets? I once saw one in a shop, and one smiling
 
I hope you're all aware just how brave @holysmoke </holysmoke> is. It's not easy to target and 'Brigadize' thousands of chronically sick people you know

http://twitter.com/HurstAKA
Maybe some people don't understand the history of Simon Wessely influencing Elaine Showalter among many others.
Wikipedia has a good page on psychological manipulation and the reasons it works. One is naïveté.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
We've lost our 'search thread' option, so I'd struggle to track these examples down.

The 'search this thread' option is still here, Esther.
In the drop-down search box, at the top-right of each thread, there's a tick/check box labelled: "search this thread only."

Note to self: I've also just noticed that there's another tick/check box which is already ticked, which means that any search is limited to a single sub-forum ("search this forum only"), which I'll have to watch out for.
 

user9876

Senior Member
Messages
4,556
I am sorry but this is what you would like to believe but is nonsense. Are you suggesting that this latest opinion piece is 'high profile'? It is sensationalism at it's finest Currer and reflective of nothing but the author's lust for stirring already stirred pots.



I wondered how long before you started on yet another personal 'conspiracy' reason. Let me guess as to the identity of the 'who'. Is it Dr Evil sending his pawn mini ME out into the world to undermine any 'legitimacy' that dare threatens his pharmaceutical empire?

Sorry. I really am. I am taking the piss a little but having now read several pages of comment attached to this latest crap from Thompson - I need some levity.

Just got to the exchange between the two most frequent air mile posters and a chap whose cousin's daughter has leukaemia. You read that? Of all the conversation to get stuck into - that is most definitely not one of them: what will be seen as the olde and pointless: my disease is worse than yours and this little girl is clearly not as demanding as you lot are' argument.

Why-oh-why do people insist on engaging with anything and everything that is said on a bloody comments page when the authors deemed to 'offend' could themselves be taking the piss? To do so in such a fashion as is being displayed by non-patient and proclaimed patient alike - is in my own view - suggestive of manic behaviour.

And now we have been seeing one of those said individuals promoting her view that Lipkin was positive of an association - for heaven's sake. I mean. This is really getting bloody ridiculous now. If it was a single comment it wouldn't be so bad would it and I wouldn't feel the need to say what I am - but it's not. The same two people are literally 'all over the place' both in what they are saying - slamming the points of others - and in the frequency of their postings (not to mention the times of them).

Still. I must remember that each to their own I guess. Except I don't have to do I? Because these fools are making a mountain out of a mole hill and the created stigma will continue to grow so long as they keep at it.
I read throught a lot of the comments to me there were people trying to discuss the science. Some some what obsessively. There were people saying they didn't believe in ME or they new people with ME who they thought were malingerers. I actually thought alot of the comments were better than the article.

The comments I found really scary where the Islamaphobic ones and I find in particularly worrying since most of the audience seem interested in supporting these. So someone writes a comment accusing muslims of being child abusers and it gets 108 recommendations (when I read it). Compare this to any of those in the ME discussion of 20 at most. To me the extremism comming across in the comments is not around ME but around Islamaphobia.