ME patients protest coverage of threat allegations

[Valentijn]

However there is huge danger in totally ignoring these claims. If nobody protests, then why shouldn't everyone presume the claims being made about ME patients and advocates are right? All the claims? Without protest there is no sense of dissent, without dissent then it looks like we agree.They can say what they like, and we have prestamped approval.

Well, when the issue does come up I think it is important to say that even the victims of the threats say it's a very tiny minority of ME patients that have done that (I count maybe 3 semi-specific instances of reported threats), and no one condones it at all. But really, "we" don't actually know anything about those threats except that some things that have popped up in the media seem to include FOI requests as a type of threat!

I think the real issue is to break the mold. Break out of the argument and set our rules. I am only just beginning to think along these lines. We need to create a separate debate about things that matter, not spend time on things that don't. By engaging on things that matter, these other issues may look more and more irrelevant and like distractions.

I think it can be turned around on the BPS school somewhat - that we are being forced to accept their dogma/political views, or risk being denied appropriate care/benefits/recognition/etc. I think we spend a lot of effort trying to disprove the science - that has a place, but once the science has been disproven (as it has been now), we need to stop acting like that is still the major issue. The real issue is that despite the science being disproven, the BPS school is still trying to force its beliefs upon us.

I think framing it in religious and/or political terminology could be a useful approach, since it helps to illustrate that 1) those BPS opinions about ME are not scientific and 2) that we have a right to reject those opinions, just like we have the right to choose our religion and political beliefs. We are being repressed in a variety of ways for their political/dogmatic gain. We are the ill ones and they have made us their victims.

And we shouldn't apologize for being angry! Have you seen the autism advocates going after the pundits who blamed the school massacre on autism? The autism group is being insulted by that blame, they risk being more marginalized by it, and they have every right to be angry. No one seems to think that proves they're mentally unbalanced or should be ignored.

 

[alex3619]

Doh, Valentijn, you are stealing some thunder from my book! Yes, its more akin to religious doctrine than science, as was Freudian theory before them. There is a reason the fundamentals underlying the dysfunctional belief doctrine have been called nonscience and pseudoscience. If a model is untestable, and based mostly upon questionable rhetoric and appeal to prejudged and ill informed theory, with supposed justification that some might have improved, again questionably, based on studies that are loosely based on the theory: how is that not akin to cult thinking? Hysteria, conversion disorder, somatization: is there any evidence any of it really exists? Whats the biomarker?

Reframing the debate along many of the issues you raised are points I am considering. There are reasons I have been talking about it as religion and politics.

 

[Firestormm]

Well, when the issue does come up I think it is important to say that even the victims of the threats say it's a very tiny minority of ME patients that have done that (I count maybe 3 semi-specific instances of reported threats), and no one condones it at all. But really, "we" don't actually know anything about those threats except that some things that have popped up in the media seem to include FOI requests as a type of threat!

Actually we do know more than that, and FOI requests did not form part of the original pronouncement of threats being made against researchers that appeared with the BBC Radio 4 Today Programme.

Specific instances have been made. Extracts were read out. Crawley did describe how she was 'contacted' by one nutter, referring I seem to recall, to a rather detailed wish she had drowned to the extent that 'he' was viewing her dead body.*

Unless you are prepared to go back and review the actual media coverage - I would suggest you don't try and sweep it all under the carpet as your comment above appears to suggest you are doing.

Granted it is difficult to point to individual instances and decide if they are part and parcel of the whole 'problem' but we can only go on what we are shown.

If your contention is that without seeing the actual 'threats' yourself you are forever going to doubt their existence or their veracity - well nothing I or anyone else says will change your mind.

But I do not believe that legitimate attempts to engage that do not 'harass' or 'threaten' will be rebuffed. Here's something even I didn't know. Not even sure if it is true - probably is as there's no reason it isn't:

"...the terms of Section 7 of the Protection from Harassment Act which defines a course of conduct (constituting harassment) as being conduct causing alarm or distress, including speech, on two or more occasions..."

http://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/

I would suggest that making a FOI request is not an act of Harassment. I would further suggest that terms used in media articles or by individuals such as 'threats' or 'harassment' need not refer to the legal terminology - that they are simply terms.

If I received several emails from the same person that I felt were of a 'threatening nature' I might conclude they were 'threatening' emails etc.

I won't try and comment further.

I do wish you a happy Xmas and hope very much that 2013 sees something positive for us to debate.

Edit:

Link to transcript of Today programme: http://forums.phoenixrising.me/inde...ague-with-dr-crawley-et-al.11685/#post-201332

Edit:

*Cannot discover this example. Might not relate to Crawely, might not relate to anybody. I might have made it up. I didn't but until I find the source - I retract the comment.

 

[Valentijn]

Unless you are prepared to go back and review the actual media coverage - I would suggest you don't try and sweep it all under the carpet as your comment above appears to suggest you are doing.

Sweep what under the carpet? Something only remotely related to ME which I (and everyone else here) had no involvement in? There's nothing to sweep. Threats to researchers are not an ME issues - they're a criminal issue that happens to involve a few presumed ME patients. It is not an issue we should be focusing on.

If your contention is that without seeing the actual 'threats' yourself you are forever going to doubt their existence or their veracity - well nothing I or anyone else says will change your mind.

No, my contention is exactly what I said it was: that we don't know anything about those threats except what has essentially been said in the media. And threats are bad! I absolutely refuse to have my ignorance about the situation equated with denialism.

But I do not believe that legitimate attempts to engage that do not 'harass' or 'threaten' will be rebuffed.

Actually there has been a lumping in of letters to the editor regarding the PACE trial as harassment and militancy. Which was quite ridiculous, as all the published letters were scientifically based, logical, and reasonable. I believe Professor Hooper's letter response to the trial (okay, maybe closer to a novel in length), was treated with similar disparaging language.

One example is at http://www.timeshighereducation.co.uk/story.asp?storycode=417219

The militants, who object to any suggestion that the illness has psychological causes, have turned up at lectures with knives, punched scientists in the street and issued death threats, it was reported on 21 August. They are also said to have bombarded researchers with Freedom of Information requests, made countless complaints to university ethics committees, and falsely alleged that scientists pursuing work in the subject are in the pay of drug and insurance companies.

Another is at http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02468.x/full

This dispute between the various protagonists recently surfaced with the PACE trial published in the Lancet [2], which provided evidence for effectiveness of elements of cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) for patients with CFS. This publication triggered unscientific and sometimes personal attacks on the researchers in both the scientific literature [3–10] and via the Internet [11].

The "sources" in the 2nd snippet are the published letters in response to PACE, which one of our forum members thoughtfully summarized here: http://forums.phoenixrising.me/inde...s-from-biopsychosocialists.14306/#post-236319 I'm not sure where they're getting "unscientific" from that, much less "personal attacks".

If that's not rebuffing legitimate attempts to engage, I don't know what is.

 

[Adamskitutu]

I would suggest that making a FOI request is not an act of Harassment. I would further suggest that terms used in media articles or by individuals such as 'threats' or 'harassment' need not refer to the legal terminology - that they are simply terms.

If I received several emails from the same person that I felt were of a 'threatening nature' I might conclude they were 'threatening' emails etc.

But this means it's subjective, and it implies any person can cry 'harassment' and we are all supposed to swallow that without question. Obviously people aren't going to do that. They aren't masochists.

Link to transcript of Today programme: http://forums.phoenixrising.me/inde...ague-with-dr-crawley-et-al.11685/#post-201332

n.b. I haven't checked to see if the drowning example is on there - I think it is - but can't remember and can't be arsed to check now.

I can't see anything like that on it.

 

[Firestormm]

Thanks for going to all that trouble (above) in finding your evidence. I will not be making any more comments relating to this subject.

If I misunderstood/misinterpreted your allegation/comment I apologise. I still maintain that there were specific instances of behaviour that led those who 'went public' to do so. That was what this is all really about but now every and all instances that might be associated with 'extremist' activity has been associated with it.

You mentioned FOI requests. If these are reasonably made to the appropriate authority then I cannot see them as examples of 'harassment' - I can't. Personal attacks, certainly, but not reasonable FOI requests or published letters in e.g. the Lancet for example.

Whether or not a scientist will concur with what a non-scientists considers a failing of the e.g. PACE Trial (and bearing in mind that many if not all charities have also expressed at least some reservations about PACE), I am not in a position to say.

If the contention is that 'they' have not engaged with 'us' to our satisfaction - then I can't see how this would come under 'harassment' for example - unless people's frustrations were 'vented' inappropriately.

If one approaches a debate with the aim of 'it's my way or the highway' and that 'I am right and you are wrong' and that there's no compromise to be found; that one's position is inarguable - then I don't think anyone will get anywhere.

Of course you might say that this is the position taken by those behind PACE. Similar arguments were I recall made against those who claimed XMRV can't be responsible for ME also.

With PACE however, I will agree that there does appear to have been very little attempt made to 'engage' from those who were behind it. It would have been preferable to have seen I think an open meeting and better attempt by them to help us try to understand and for us to help them see our own points of view.

I happen to think that with more science being made more available to e.g. patients and non-scientists such as the media (generally), more and not less effort needs to be made in this regard including greater attention to the language in scientific papers of significance.

And that the e.g. Science Media Centre are largely failing in this respect. But. If you approach PACE with a preconceived idea that it should be e.g. retracted, I think you would be on a hiding to nothing.

If all this 'harassment' has created a certain aura of fear (fear that if I try to engage with scientists I will be thought less of or be treated with some sort of contempt), I am afraid I do not believe it. Sorry.

Didn't intend writing so much. Need a break. Look I'm only going to track the Ampligen review for now. So I won't be replying any longer. Might post some research if any comes out between now and the New Year but I want some time with my family.

Russ

 

[Firestormm]

I can't see anything like that on it.

You are right. It was here I think: http://www.bbc.co.uk/programmes/b012nlcv I recall that I typed the transcript Adam, like I did for the other programme. I will need to dig it out because I can't see it posted anywhere on this forum. It might be but I can't locate it.

Will search on my system. Give me a moment. If I can't find it then I will delete my reference to it. Certain though. It's here somewhere...

 

[Bob]

The "death threats" argument sucks the life out of anything further in any letter we write. It's too powerful and emotive in the public's mind. That why the Wessley group will keep bringing it up. They will use it for that reason.

We need to bring to the forefront the suffering, neglect and urgent medical needs of PWME. If we keep apologing or even mentioning the death alleged threats that is all the pubic will remember. If we say that words it overshadows our message. We are doing the work of the SW lobby for them.

I totally agree with this approach. The alleged threats are an exercise in distraction, designed to move the public debate away from the serious issues.

 

[Firestormm]

You are right. It was here I think: http://www.bbc.co.uk/programmes/b012nlcv I recall that I typed the transcript Adam, like I did for the other programme. I will need to dig it out because I can't see it posted anywhere on this forum. It might be but I can't locate it.

Will search on my system. Give me a moment. If I can't find it then I will delete my reference to it. Certain though. It's here somewhere...

Nope. I can't find it. Might not have been from Crawley. It was something about, this person was on a bridge, looking down at her drowned body. But to be fair I can't find it and can't be arsed to wade through all the stuff I do have. An internet search doesn't bring anything up - so I'll retract that then. If I find it subsequently - I'll reinstate it. The Derbyshire interview was revealing in and of itself - along with everything else. If you want the transcript I can always email it to you.

 

[Bob]

I seem to remember some text being read out on a BBC program.
I'm not sure if it was a specific threat that was read out, or just ugly wording, which could be loosely interpreted as a threat.
I'm surprised that anyone is questioning if there has been harassment or threats.
There doesn't even have to be a specific threat for correspondence to be interpreted as 'threatening'.
And 'harassment' is subjective, so it can't be argued with: If someone feels that they are being harassed, then they are.
Personally, I think we should focus on the issues that have been mentioned: Treatment, neglect, the NHS, biomedical research, funding, etc.
Continuing the dialogue, re the threats, just keeps the issue firmly planted in the minds of the media and the public, and further associates our community with the alleged threats.

 

[Stukindawski]

I'm somewhere in the middle on all this. I'm deeply suspicious of the way the death threat saga has been handled, in that from a PR point of view, it's a perfect method of publicising ME/CFS as an undesirable field to the potential researcher. If your sincere desire is to see better research and understanding of the disease, even if it contradicts your own opinion - then these are the acts of a saboteur to such a goal.

Wessely's sensationalist comments about Afghanistan for instance send quite an alarming message with very clear and emotionally manipulative imagery.

Lest we forget, discretion is the better part of valour. If it is a Doctor's stated desire to protect and heal their patients, then acts which stymie the service of that desire, end up being quite hypocritical. Assuming the veracity of these threats, Professor Wessely as any citizen has accessed the public services available to him in order to protect himself, as just about every public figure will have at some time or other.

The desire to be perceived publicly as a victim is little more than an act of vanity, and to allow these actions to be conflated with legitimate acts of advocacy (you'll note the alarming lack of corrective letters to contest this) is irresponsible and perceptibly opportunistic.

I won't be naive on either side of this debate. I'm not going to close my eyes to the elephant footprint of media manipulation. But at the same time, I am realistic about the how game is played. It is game that follows rules we cannot set and can barely influence. We are coming to their table and despite the immense injustice many will feel, we have to put on our best suit, and use our best manners.

Without some gold piece of incontrovertible evidence, there will be no revolution. Those who aspire to power understand it is a creeping process with many masks and endurances, there is little romantic about it and there wont be any cavalry charge. The world will happily wait until our disease can be fixed with a 1 penny pill before it gets round to dealing with us, preferably at the end of a generation of grey haired gods whose entire existence stood on a pillar of vaguely plausible agnosticism in the face of all our 'biomedical evidence'.

The best chance most of have would be to find ways to expedite the progression to that 1 penny pill. If that means swallowing pride and creating an atmosphere of respect and reverence to those who research our illness. So be it.

 

[Adamskitutu]

I seem to remember some text being read out on a BBC program.
I'm not sure if it was a specific threat that was read out, or just ugly wording, which could be loosely interpreted as a threat.
I'm surprised that anyone is questioning if there has been harassment or threats.
There doesn't even have to be a specific threat for correspondence to be interpreted as 'threatening'.
And 'harassment' is subjective, so it can't be argued with: If someone feels that they are being harassed, then they are.
.

So that means that an FOI request - if experienced as harassment or threatening in some way, is. And it can't be argued with.

 

[Bob]

So that means that an FOI request - if experienced as harassment or threatening in some way, is. And it can't be argued with.

My point was that I can't see the point in arguing with these media onslaughts, on their terms.
I think we should define our own terms of engagement, and move the national media discussion onto issues that I personally consider to be more pressing and serious for our community.
But that's just my opinion.

Edit: If they were only talking about FOI requests, then I think they could be safely challenged, with a positive outcome for us, but they aren't only talking about FOI requests.

 

[Bob]

I'm somewhere in the middle on all this. I'm deeply suspicious of the way the death threat saga has been handled, in that from a PR point of view, it's a perfect method of publicising ME/CFS as an undesirable field to the potential researcher. If your sincere desire is to see better research and understanding of the disease, even if it contradicts your own opinion - then these are the acts of a saboteur to such a goal.

Wessely's sensationalist comments about Afghanistan for instance send quite an alarming message with very clear and emotionally manipulative imagery.

Lest we forget, discretion is the better part of valour. If it is a Doctor's stated desire to protect and heal their patients, then acts which stymie the service of that desire, end up being quite hypocritical. Assuming the veracity of these threats, Professor Wessely as any citizen has accessed the public services available to him in order to protect himself, as just about every public figure will have at some time or other.

The desire to be perceived publicly as a victim is little more than an act of vanity, and to allow these actions to be conflated with legitimate acts of advocacy (you'll note the alarming lack of corrective letters to contest this) is irresponsible and perceptibly opportunistic.

I won't be naive on either side of this debate. I'm not going to close my eyes to the elephant footprint of media manipulation. But at the same time, I am realistic about the how game is played. It is game that follows rules we cannot set and can barely influence. We are coming to their table and despite the immense injustice many will feel, we have to put on our best suit, and use our best manners.

Without some gold piece of incontrovertible evidence, there will be no revolution. Those who aspire to power understand it is a creeping process with many masks and endurances, there is little romantic about it and there wont be any cavalry charge. The world will happily wait until our disease can be fixed with a 1 penny pill before it gets round to dealing with us, preferably at the end of a generation of grey haired gods whose entire existence stood on a pillar of vaguely plausible agnosticism in the face of all our 'biomedical evidence'.

The best chance most of have would be to find ways to expedite the progression to that 1 penny pill. If that means swallowing pride and creating an atmosphere of respect and reverence to those who research our illness. So be it.

I agree with most of what you've written here, Stukindawski, except the bit about treating the psychiatric lobby with "respect and reverence", and that we "have to put on our best suit, and use our best manners."

I do agree with taking a scientific approach, which challenges their model of illness, wherever possible, alongside a reasonable, intelligent and focused political approach.

But I do not agree that placing their attitudes on a pedestal, and treating them with respect and reverence will serve any beneficial purpose. IMO, it would just inflate egos, and reinforce delusions of grandeur.

Instead, I think a healthy amount of disrespect, and irreverence, is often needed to counteract over-blown academic egos.

 

[rowland]

I'm somewhere in the middle on all this. I'm deeply suspicious of the way the death threat saga has been handled, in that from a PR point of view, it's a perfect method of publicising ME/CFS as an undesirable field to the potential researcher. If your sincere desire is to see better research and understanding of the disease, even if it contradicts your own opinion - then these are the acts of a saboteur to such a goal.
Wessely's sensationalist comments about Afghanistan for instance send quite an alarming message with very clear and emotionally manipulative imagery.

People have suggested the "stay away from ME" campaign is related to XMRV, but it does seem to coincide better with the change of research direction at the MRC in 2011.

 

[duckndive]

Nope. I can't find it.

Your recollection was almost right except it was Myra McClure:

"I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse," said Professor Myra McClure, head of infectious diseases at Imperial College London. "One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months."

http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

 

[Stukindawski]

edit: oops, this is a reply to Bob's last post btw!

I do respect a person's right to be utterly wrong though. The danger of being wrong is a hurdle for every type of action or opinion.

Wessely opinions survive by the paucity of publicised academic opposition. Often the opposition comes from stitching together the research of others served on a dunning-kruger-esque platter, but few at least here in the UK take the absolute stand against his opinions (that's if we can find out exactly what they are at some point ). Dr Shepherd will repeat ad nauseam that ME is a neurological condition and that biomedical research is the right way to go of course. Professor Hooper et al are trying to decapitate the beast. Dr Gibson will go as far as...tentacles.

Professor Newton is frankly as credible as anyone in the UK looking at ME, but if you observe the talks and interviews she gives, she plays the game and knows the world she's in. Nothing she does has any air of contention or undermining.

All of these voices seldom come together under the same banner either. It's like a bunch of solo singers, only some of which are trying to make more noise than the gospel choir.

It's funny how who is in power says a lot more about the way things are than who is right. Since nobody is currently right, power is all that is left.

 

[Stukindawski]

People have suggested the "stay away from ME" campaign is related to XMRV, but it does seem to coincide better with the change of research direction at the MRC in 2011.

Indeed, when you think about it, XMRV rather presents the perfect opportunity, given the coverage.

Piggy back rides for everybody

 

[Jarod]

Stukindawski said...

I won't be naive on either side of this debate. I'm not going to close my eyes to the elephant footprint of media manipulation. But at the same time, I am realistic about the how game is played. It is game that follows rules we cannot set and can barely influence. We are coming to their table and despite the immense injustice many will feel, we have to put on our best suit, and use our best manners.

People are waking up to media propaganda and that plays into patients favor moving foward. However, as the propaganda becomes less effective, it will lead to more bold manuevers. (more awards? )

Regarding rules that are difficult to influence: One has to understand for this type of dysfunctional system to exist, it requires much support. Talking about government in general. So it says something about the others involved in supporting this dysfunction. Many people supporting the dysfunction are manipulated and deceived to some extent in my opinion. Once they wake up, a few of them might help fix the system from within.

It took a long time(and many people) for the system to be subverted to the extent it is now. It might take a few years, and many people involved to get it back. My perception is there is more advocacy in the UK, because you guys have been hosed for longer. Still got over a 100 developing countries in the world, and I don't think they will be as easily duped.

 

[Seven7]

Scenario #6: The threats are real but made by whomever is covering the truth nature of what CFS is, they want us to attack each other (Drs and Patients) so by the time they are done with us, we don't know if we are coming or going and we are all telling the truth.

I think if we open dialog in an organize way maybe invite Psys to the government hearing and we have the big clinicians (Inmuno people) to debate we can clear the air. Do public interviews and try to show a united front that we are open to anything that resembles a cure/stability WITH REAL RESULTS but we need the position clear from Psys Vs the physical evidence that we have had over the years.

Maybe do a CFS movie equivalent to the lyme one "Under the skin" where all this stuff is exposed and analyzed.