Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.
IVI - go on try
Could you provide an English translation for that please IVI?
Sometimes I think you've logged onto the wrong forum by mistake, IVI.
This isn't a philosophy forum, it's a patient 'community' forum.
The very existence of the forum, creates a supportive 'community', although I know you don't like that word.
By nature of having the same illness, many of us have shared experiences, and so we often have shared perspectives.
Our shared perspective is not enforced, but it just means that a group of people have come together who happen to have some shared experiences, interests, goals and needs. And, based on this, we've come across similar facts and information over the years. The forum works for us, so we use it. But it's not like we all have identical opinions. There's a diverse range of opinions here.
My understanding is that you are not an ME patient, IVI, so it goes without saying that you might not have a shared perspective with the majority of forum users.
If a forum user doesn't share the perspective of the other forum users, then that can't really be helped.
As long as we are all considerate, and respectful, then that's all that can be asked of us really.
There is a diversity of views on the forum, about a variety of subjects and issues. And it's a pretty tolerant and respectful forum, on the whole. Some subjects get heated, but that's unavoidable on such a large forum, when discussing such sensitive issues.
If some of us are of the opinion that we have been systematically lied to etc., this conclusion is based on shared observations and experiences of the world.
We could list all the examples, of why we have come to this conclusion, and maybe we should.
But I think most of us know the reasons, so we don't feel the need to explain ourselves each time we say it.
You have said that it is an 'opinion'. Well, of course it is an opinion, based on facts, evidence and experienes.
But you haven't given us evidence for your own opinion, either, if you oppose the opinion that we've been systematically lied to.
At least the opinion of ME/CFS being a physiological illness has facts to back it up.
What facts does the author have in his "assumption" that this is a Psychiatric illness?
Why not give him the burden of proof instead of us? What scientific findings does he base his "opinion" on?
By the way, he is not just a journalist. He is a doctor and as such, he has an obligation of "first do no harm".
You might ask "what kind of harm is he affecting?" and I will tell you that this kind of reporting results in direct harm to countless of patients.
1) How many ME patients have been harmed by the forcing of physical activity? Not only were they temporarily harmed but, some have been permanently harmed. We will never know the count of deaths of ME patient that can be attributed to this kind of archaic thinking.
2) Doctors in general have been swayed by this type of reporting and because of it do not give the proper care that is due to their ME/CFS patients.
3) Countless patients have just been given anti-depressants to "treat" their ME/CFS which not only did not help but, contributed to the decline of their health.
4) Because ME/CFS patients have been "labeled" as psychosomatic sufferers for so long that doctors have been ignoring their complaints even when it is outside of the ME scope.
I'll give you an example: a month ago, I went to my GP because I was suffering from numbness and tingling in my face, lips and tongue. My GP, knowing that I am a (malingering = lying = exagerating of symptoms) ME/CFS patient, barely looked at me and said "stress can do that to you". I followed it up with a neurological consults who sent me for a brain MRI. It turns out that I have a brain tumor (benign) which is pressing on the trigeminal nerve and needs to be removed!
Because of articles like this, we are made to be perceived as unbelieving, exaggerating..even psychotic people.
Why is it that till the age of 49, I was perceived as a very intelligent, hard working, responsible mother, wife and manager at an Insurance company. Then I'm hit with a vicious virus which instantly renders me a lazy, malingerer who has major psychological problems and can't be relied on or believed in?
Best wishes to you Nielk. I hope your tumor is sorted out swiftly.
I had a similar problem. I said to my doctor that I thought I had sub-clinically fluctuating endocrine levels, related to the ME, because I was feeling over-stimulated. Although my doctor is not unpleasant, she accidentally gave me a face as if to indicate that I was just talking absolutely incredibly ridiculous nonsense.
I couldn't be bothered to say anything else to her, because I knew she couldn't do anything anyway.
But what I didn't point out to her, is that she already knew that my thyroid levels were fluctuating, because she had been treating me for hypothyroidism, and then it corrected itself after a couple of years, at least to within a clinically acceptable range.
So even in the face of the evidence, they still don't believe us!
She couldn't explain to me why the thyroid had corrected itself, of course, or what the cause of the hypo-thyroidism was. Unless a shrug is an explanation.
Yes, they are so deeply deeply disrespectful, aren't they. And they haven't got a clue why because they don't listen to their patients. I'd never come across people who have such a poor insight into other people, until I came across the psychiatric lobby. Ironically.
Problem is you are doing the equivalent of blaming Halfords for selling Andrew Mitchell a bike. There is only one person at fault here and that is Pemberton for writing such an inaccurate rubbish article. We are about to extradite a man to the US for not conveying accuracy or reason.
Community is a deeply abused term, and in the context of the Internet usually means little more than a ‘monetisable target group’. That some people experience the existence of an M.E/CFS community is fine, what that doesn’t do however is confer the existence of that community as a reality for everyone with M.E/CFS, or allow anyone the honest freedom to define that community in solely their own terms. A key aspect of this thread is the behaviour of people who act and speak as if they had the authority of a community, and by so doing allow those whose interests (Pemberton etc) are wholly divergent from any collective interest that could be seen as existing amongst M.E/CFS affected people, to condemn us collectively from the mouths who claim to speak for us or in some way represent a collective view. For a community to have validity for its members, requires more than just commonality of interest, it requires supportive internal dynamics and a determined inclusivity. What has characterised (and continues to do so I my view) the internet presence of M.E/CFS affected people is intolerance of dissent, closed group thinking and a perpetual concern with qualification for or failure of ‘belonging’.
Which goes the heart of the belonger/non belonger problem - anyone speaking from perspective outside the accepted norm, becomes labelled a troll. And I think you protest way too much - I distinctly recall the demand for a sub forum on PR, that was for "positive XMRV comments" only - I'm glad to say the management resisted it.
What is this ME patient 'community' that could have a majority ? You've once again appealed to something which has no means of collectively expressing its will or belief. It may well be a truism that very few (none !) of us with a diagnosis would view the illness in psychiatric terms but that doesn't translate into either a valid presentation of a majority view, and it most certainly does not lead to a majority acceptance of M.E/CFS being characterised by a predominant presentation of what the illness is not and the location of all the ills of M.E/CFS patients within a particular medical specialism.
I didn't say anything about individual character flaws. As far as individual anger is concerned - understood or not, what's that got to do with what is at issue here, other than as an excuse for people who feel entitled to get their emotional 'rocks off' at any opportunity in the name of speaking for M.E/CFS patients. Anger isn't ever going to produce an effective respose to Pemberton or his audience - that's the trap, it just confirms their prejudices.
You are buying into Pemberton's vilification of ME patients.
Perhaps his aim is to divide and conquer. Let's not let him do that.
We cannot be responsible for the behaviour of random members of the public.
But we can try to hold Pemberton to account.
IVI, please don't misinterpret or misrepresent what I said.
When I used the term "troll-like behaviour", I meant it accurately.
i.e. repeatedly posting the same information, without engaging in discussion, etc.
I was not referring to people who disagreed with my own opinions.
I was actually pointing out that your portrayal of the forum was a one-sided point of view, such that you were accusing forum members of not tolerating XMRV sceptics. When in fact there was a certain amount of intolerance on both sides of the argument. But overall, in my experience, there was mainly civilised and intelligent discussions on this forum.
I don't recognise your portrayal of this forum as a divisive, intolerant and disrespectful forum.
Firestormm and anyone else who seems to think that asking for evidence of harassment is inappropriate.
Again, I suspect or accept that a degree of genuine harassment is probably occurring (which is of course unacceptable) and there may be a few intense personalities around as there are in any population, but these type of news articles and authors portraying negative aspects of the ME/CFS patient-advocate "community" have never produced verifiable evidence of criminal behaviour, just anecdotes of such which also tend to conflate criticism with harassment.
The same happened during news coverage of the PACE Trial (and in the reader comments), and Horton of the Lancet also implied that the few dozen letters he received were just part of an orchestrated campaign to discredit the PACE authors (rather than a collective of individual responses of genuine critique). CFS researchers Lloyd and van der Meer went as far as ridiculously claiming in a medical journal that *published* letters in the Lancet were examples of extremism, as so-called personal and unscientific attacks on the PACE authors, which is false, but they got away with it too.
I noticed that some of the people on this thread have previously been highly critical of the PACE Trial and other research involving cognitive behavioural factors in ME/CFS. I bet none of them see themselves as militants or extremists but much more moderate than that. However, we have all virtually been deemed militants or extremists by others, at some point or another, for challenging the claims and authority of White et al, the Lancet, Wessely et al. To expand on what Bob touched upon, I think we are in danger of over-feeding the notion of a fringe element, whenever we deflect accusations involving the actions of us self-styled moderates by simply passing the accusations along to an alleged fringe element and ostracizing a proportion of the "community" without adequately evaluating such claims first.
I am supposedly a militant extremist for questioning and doubting the cognitive behavioural model of ME/CFS, and supposedly part of the so-called "orchestrated (hate) campaign" against the PACE Trial for emailing Richard Horton once out of my own volition about a verifiable error in a Lancet paper. In reality, I, just like many others here, am not a militant extremist and am just a long-term patient seeking accuracy, fairness, and treatment.
So of course some people are going to doubt claims about extremism and harassment when it has been repeatedly being used against them (without much evidence) to smear and dismiss their objections to questionable claims being made about their illness(es). I wonder how many of those 200 or so people in Pemberton's case actually engaged in militancy and harassment as opposed to just being persistent after arguing with Pemberton? If the police really were involved in this case or many others, surely it would not be too difficult to provide verifiable evidence of their involvement? Considering the history mentioned above, why is it shameful to ask for evidence?
Amateurish and caricaturistic explanations for patients' criticisms of, or objections to, the biopsychosocial approach, such as the fear of and contribution to the stigma surrounding mental illness as not real, are insulting. It is disheartening to watch professionals seemingly struggle with the concept that "it is a little more complicated than that". Although, as IVI said, perhaps Pemberton is playing the shock jock and is more aware of the situation than he appears to be (including of the fact that 1 in 3 people did not "recover" in the PACE Trial due to CBT/GET, as claimed in his previous article).
I take indirect personal issue with these claims about harassment, not because I am involved with or named in the alleged harassment, nor because I deny the possibility it is occurring, but because I am (we are) implicated whenever the alleged harassment is conflated with critique of the biopsychosocial approach to ME/CFS.
So many issues raised IVI. First of all, PR is not a monolithic community. There are subgroups.
I don't speak for everyone when I say this, but in many respects we are much less an exclusive group than you claim. We embrace a wide range of people and issues. Most (?) of us do not particularly care if someone has fibro, or CFS, or ME or MCS or Lupus or MS, or is just a concerned citizen, we just care. We do argue about accuracy of definitions, and hold strong views, because definitions matter to research. Its not about us and them, its about effective research.
The audience of Max Pemberton is also not monolithic. Some will be reached. Those who cannot be reached probably will not be reached by other means anyway. You can't convince everyone. I don't think we will convinved Max either, though I would be happy to be wrong about this.
Its not about oppression in my view. The oppression dynamic is a diversion from real issues. Is there some oppression going on? I think many people think so. However, I prefer to deal with facts, things like oppression go to motivation which is nearly always doubtful to some extent. ME research is massively underfunded in comparison to even slightly comnparable diseases: fact. Too much ME research is going to psychiatry: observation and interpretation. Too many of us cannot find basic medical care that is affordable and realistic: common observation. Too many of us face denigration, accusation and disapproval: common observation. To infer from these things and similar issues that this is about an oppression dynamic is twaddle. Some will view it that way, sure. Ignoring these things because they might reinforce an opinion of an oppression dynamic is implying we should be saying that if it might go wrong we should do nothing. Problems need to be expressed, not hidden, not avoided, and hopefully not overinterpreted.
Now in one sense I agree with your observations about ME community. PR is not THE ME community. Nor is any other group. In some sense we do not have a collective identity, its more a spectrum. I have no problem with that. However, its the case that those who want to make a difference, who are pushing for change, do engage at many levels - thats a community, the advocate community. Those who are just seeking treatments and want help - thats a community, the patient community. A community is not monolithic. In the case of neuroimmune diseases its about shared goals. Those who share those goals join in. They are self selected. The internet is also a selecting process. Not everyone joins. Not everyone can use a computer - the very sickest of us can't.
Its also not possible to get a full sense of community just by reading forums like PR. It requires at least dynamic interaction - chat and the like. It benefits from experience of real world support and advocacy groups. What creates the sense of community in my view is both subtle and obvious. When I get together with other members of this community, we understand each other. Its hard to define, but its obvious to those who experience it. Communities self assemble. They are not defined. They create themselves. If you define them in a sense you have misdefined them. They are not something that can be summed up in an equation.
There are many ways forward. There is also a lot of evidence of things that I am sure some would call "oppression" that I have not discussed yet ... I will in time.
Now rather than a sense of oppression, if you want to talk of a sense of injustice, that would be more effective. Injustice and oppression are not the same thing. One is about balance and fairness, the other is about a coercive agenda. I am happy with talking of injustice, but see no usefulness of talking about oppression. To validate oppression requires whisteblowers or judicial enquiries or a paper trail. Its never happened, though I can't rule out the possibility that it might.
That's a helpful perspective, biophile.
Indeed, when Richard Horton accused patients of an orchestrated but irrational smear campaign, he was implicating all of us who have made submissions to the Lancet. He did not make a nuanced statement, saying that there had been plenty of very intelligent correspondence from the patient community (some of which was published by the Lancet.) It was an over-arching allegation, seemingly based purely on his discomfort.
What he has still not done, to date, is to correct the Lancet commentary which incorrectly states that 30% of patients recovered after treatment with CBT and GET. Seeing as only 13% responded to treatment with CBT and GET, at best, it is not surprising that he received a lot of submissions, trying to correct his misinformation.
So who is irresponsible here? The Lancet for publishing utterly incorrect information, which has the potential to severely harm ME patients, or the ME patients for pointing our the errors? Why is Pemberton, the so-called journalist, not doing proper journalism, and holding the Lancet to account?
When Pemberton accuses patients of harassment, he is directly implicating any of us who reasonably responded to his article by writing a complaint to his editor, etc. He isn't just referring to a fringe element. He's talking about any of us who engage reasonably and intelligently, to hold people like Pemberton to account.
Any tweets from the 200 or so people who have allegedly harrassed Pemberton, are in the public domain. So I think we can assume that there was no illegal activity involved there, because we have not heard about any arrests or criminal proceedings. So, it doesn't seem like it was illegal harassment. The word 'harassment' just suits his needs. He could equally have called it 'engagement'.
It's not too difficult to develop a protocol of what approaches work where - it comes down to acknowledging the audience and constructing responses accordingly, although some circumstances rquire partilurlar reseources, which may not always be available. In the case of the Daily Telegraph (often known as the Conservative Party's house magazine) my instinct would be that the only useful responses would be those from people with demonstrable authority - scientists, medics, organisation CEOs etc - the objective would be to subtly turn the focus back to the biological possibilities outline by Lipkin, in terms that would be acceptable to the anti welfare pro business audience (cost savings from research investment etc). The opportunity is now anyway bust - in terms of the Daily Telegraph the vast hoards of the great unwashed have Flash Mobbed a minor article by one of its Tory Boy columnists thus proving the very point said columnist was making - prejudice confirmed, end of story. But in the end the thing is to recognise that the audience is interested in its obssessions - not ours.
It's difficult, the extremist dictum is to use anything and everything that's available, because they are fighting for the truth. You can't win any argument against that mentality. In the end I think it comes down to whether there is a confident and assertive (as opposed to aggressive) alternative presentation of what M.E/CFS and living with M.E/CFS means. Part of that would entail abandoning anything that might seem to suggest conspiracyism, victimhood, a lack of resiliance to criticism and an acceptance of crankery; above all though abandoning a description of M.E/CFS that involves saying what it isn't (psychiatric) because to do that only endorses the message that it is in fact 'psychiatric'. It's the basic psychology of denial that when over repeated it evinces disbelief in the denier and a subliminal acceptance in the audience that what is denied is in fact the truth.
Hi biophile & Bob, I see this as a potential tactic of misdirection. The letters in question that critiqued the Lancet's PACE publication were generally accurate, balanced and not inflammatory. I will not speak of why, but of what. A number of biopsychosocial advocates have used these unsubstantiated claims and it has captured attention. Newspaper reporters have repeated it. I do not doubt that most of these people receive hostile letters. What I doubt is that most of the letters are hostile rather than critical. I agree with biophile that there is a conflation of critical analysis with hostile objection.
Having said that, I do NOT agree that non-violent anger has no place in all this. We not only have a right to be angry, but mass anger is one of the things that makes a difference. There is always a risk that some will step over the line, but its much less with us because we are too sick to plan violence.
What has surprised me though is the level of non-violence given the things that have happened to large number of us. I have expected, but not seen, that close family members of patients who have been treated unjustly and in some cases have died, might have done something violent. Don't get me wrong, I think thats a good thing. Its definitely in our favour.
Violence is bad. Anger is useful. We have so much trouble getting motivated. So many of us are too sick to be advocates. So many feel disempowered and don't think they can make a difference. Anger can make that difference, provided it is rationally directed. Giving people rational ways to express their anger is, to me, an important part of advocacy. It directs the community away from very detrimental acts, and toward potentially effective acts. This is not a claim we have been particularly effective, we have much to learn.
What I do think though is that advocacy needs to operate with a range of tactics. Scientific debate needs to be rational and careful. Political debate can be angry or satirical. The two are not the same, but they complement each other.
I have much more to say, but I will leave that for my planned blogs.
Interesting post Alex.
Any idea if Freud and a large number of unexplained diseases originated about the same time in history????
On the basic psychology of denial convincing of the opposite, I am not convinced this is any more than superstition and irrational thinking. Many have claimed it, including Freud. Personally I think we can ignore that one entirely, or attack it directly. Its part of what I am fighting against, such simplistic and irrational attitudes. Its a political argument, and there is a political sense in which it has a part to play, but I think the strategy should be to show it up as irrational and stupid, not to be afaid of it. Bye, Alex
Put simply, yes, though I think its more about invention of new diagnoses than appearence of new diseases. Its why I am interested in Freud and Charcot. Charcot defined hysteria, which up to that point in history had been a vague and ill defined term. Freud learnt from Charcot. He expanded and diversified hysteria, and had a lot to say about neurasthenia as well. Later on the diagnoses fractured (early 20th century) into a multitude of alternative diagnoses, much of which I have still to investigate.
Stay tuned. Many may not be aware of this but actions along the lines proposed by IVI are being discussed by some advocates. Its in the planning phase. In addition I and many others have done exactly this in the past. Its important to say these things, but they don't necessarily work. There is more going on than saving money, its about ideology and rhetoric.
On the advocacy toward the Daily Mail being bust, not likely. Thats an extreme interpretation in my view. It presumes, for one thing, that there is only one target audience, with which I disagree. For another I think we need as much of this as possible to be part of the public record. If we sit back and play lame ducks then its duck season for some people.
We will never have a fully united front on advocacy or ME or CFS politics. Never. No political movement ever has, unless of course its a the very thing that IVI warns of, the creation of a cult-like movement. Only cultish group think creates such unity. So we can dismiss these concerns, and focus on the what can be achieved postively. By providing positive ways forward a lot of advocacy will be directed to more beneficial outcomes (hopefully).
Again I have more to say about this. Plans are afoot, but I can only write things up so fast.
I just finished scanning through the notes of patients who have signed the thank you card for Dr. Lipkin, and am so impressed by it. I would suggest that a copy should be mailed to Max - just for the purpose to show him how this threatening mob of derelicts behave.
If you have not signed it yet, here is the link Sign card here
I think there was a comment on one of his articles about this, though I am not sure and don't have the time to go back and find out. Bye, Alex
HI Currer. I've pondered that same pugnaciousness as it relates to world events.
I've thought the psych's and other string pullers are making a power grab. Partly because human awareness is going through a truth skizm right now, and truth threatens their program. .
The natural response by the string pullers is to tie humanity in a knot as the elite become threatened.
My gut instinct tells me watch the EU and the mid-eastern countries. If those countries can hang on in their battle for sovereignty; humanity will be able to break free of the knot.
Maybe the Truth shall eventually set us all free...
If that is the case, it seems fair to say from that era on many of the disease's would not get proper treatment/research with the newly created psychological diagnosis's....
In effect, the creation of the psychological diagnosis prevents meaningful research into real biological based disease. Psychology can be used to subvert science. Sells lots of drugs too.
You can also try a Google Site Search
Separate names with a comma.