Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Fine that’s the way you see it, and I’m sure others will concur with your perspective - But, you didn’t present this as your personal experience or view, you invoked ‘we’ and stated your perspective as fact, which you then presented as ‘foundational’ to an appeal to a ‘community’ which in effect you were advancing as self defining. I can’t see this as anything other than hyperbolic because it demands both a specific shared perspective and an axiomatically shared identity all of which is extrapolated without any reference to validity of dissent or alternate perspective. It creates the absolute reality of an ‘ingroup’ whose sole reference of common identity is oppression by ‘outgroups’; this IMO is neither healthy, nor (and this is the significance to this thread) does it create a basis for effectively challenging such oppression as may actually (as opposed to perceived) exist.
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?
I'm afraid that misses the specifics of the situation. Pemberton is effectively playing the role of a 'shock jock' using controversy to get reaction - poking an ants' nest to watch how the ants run about and then say "look at all those silly ants" to the amusement of his audience. The audience (Daily Telegraph) is exclusively conservative, primarily middle class and heavily middle aged; Pemberton is fully aware of 'the science', but his roll as a Columnist is not to convey accuracy or reason, but to excite the prejudices of his audience. Arcane arguments about PACE or quotes from academics not openly conservative aligned, are not going to have much purchase in the DT audience. There probably are ways to write a response to Pemberton that could have a positive influence, although I wouldn't trust my very much non conservative perspective to confer the necessary insights.
IVI
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’.There is a community, IVI. At least for me there is. I don't see eye to eye on all matters with every ME patient. But I find that most of us have had very similar experiences, we have the same needs, and we want the same outcomes. We all express ourselves differently, and go about things in different ways, but we are, as a community, pushing ME research and recognition in the right direction.
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.I think you've got a one-sided view about things, IVI. There was a debate about XMRV, but it wasn't a one-sided discussion. People did express their misgivings about XMRV, often forcefully and persistently. I know that some people got a hard time sometimes, when they expressed their skeptiscism about XMRV, but it wasn't entirely one-sided. Those of us who expressed our support for XMRV research were also at the receiving end of troll-like behaviour sometimes. In any case, we are all still here, discussing other subjects in a civilised manner. I don't think I have made any enemies after our XMRV discussions. I certainly don't think any less of anyone else for having opposing opinions to myself. I've had some arguments with people who I really respect and like.
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 don't know what you mean about a minority 'we' being described by a witless anti-psychiatric polemic, as I would have thought that a large majority of the ME patient 'community' considers ME to be a biological/physiological disease, based on good evidence.
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.IVI, if you don't understand why so many patients feel frustrated and angry when people accuse us of having purely a psychological illness, then you need to start asking forum members why they have those reactions. Please don't just dismiss that anger as evidence of a flawed character, because it isn't.
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.
Bob said:Those of us who expressed our support for XMRV research were also at the receiving end of troll-like behaviour sometimes.
Which goes the heart of the belonger/non belonger problem - anyone speaking from perspective outside the accepted norm, becomes labelled a troll.
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, thebiopsychosocial 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 thebiopsychosocial approach to ME/CFS.
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.Interested in any alternative suggestions you have for combatting news articles like this. Pemberton obivously knows what he is doing and sending "spam" probably doesn't do much to influence the types of articles he writes.
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.Any suggestions for effectively responding to the extremists who somehow spread this inflammatory "news" all over the place to sway public opinion?
Opposition to a psychiatric diagnosis became a psychiatric diagnosis under Freud. Its one of the psychoanalytic defence mechanisms. In religion it would be an accusation of heresy. Under Freudian thought the argument is turned around, and it becomes the patient trying to defend themselves from an unwelcome "truth". I think its also been proposed under DSM-V, though I am not sure about that. In any case its one reason why psychoanalysis is not science. Its also a reason why modern psychobabble is not science. Bye, Alex
Interesting post Alex.
Any idea if Freud and, a large number of, unexplained diseases originated about the same time in history????
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
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 find the pugnaciousness of the psychs at this point in time particularly worrying.
It could be that they know that no amount of medical research in Britain or the US showing abnormalities will ever be enough to get our illness accepted by the health authorities.
They could just be preparing to sit out any future medical initiatives and then use the levers of power to bury them again for another thirty years once the interest generated by XMRV wears off.
How do they know it is safe for them to make the egregious and damaging assertions about us that they do? It is against all medical ethics, surely? Arent they concerned about future repercussions from their behaviour? They must have powerful friends.
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.
Bye, Alex