Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.
I checked myself out of curiosity. It is a conversation between two people.
It's ironic that Max Pemberton is a journalist, and he's complaining about the alleged harassment that he has received, as a journalist, from the public.
Usually it's the journalists who do the harrassing, as highlighted by the UK's ongoing Leveson Inquiry into journalistic ethics relating to phone hacking etc. The Leveson Inquiry has highlighted the massive scale of sometimes obscene and perverse harassment of private citizens, from journalists.
Journalists are well known for door-stepping people for no good reason, other than for profits.
And they can go to extremes of harassment, and vilification, and invasions of privacy.
Sometimes journalists even act illegally.
Does that mean that all journalists have a mental illness? Or is there just an issue with the character of some journalists?
I don't think we should either be embarrassed, or apologetic, for any treatment that Pemberton has allegedly received at the hands of a small minority of alleged ME patients. It's not our problem. If you set out to frustrate a section of the public, with lazy journalism, then you must expect that section of the public to vent their frustration. (I don't condone threatening people.)
I expect that journalists reporting from war zones suffer from far more stress than Max Pemberton has.
Allegedly receiving harassment from a small section of the public, does not reflect on the nature of a specific illness.
To suggest that it does, only reflects on the intelligence of Pemberton, and the sad quality of the psychiatry that he subscribes to.
I support political activism. Public activism is one of the few ways that ordinary people can make their voices heard. There's always a fine line between peaceful campaigning, and public disorder, and illegal activity. But Max Pemberton has conflated all three. Each individual is responsible for their own activities, and is accountable to the law. We are not responsible for other members of the public.
There's also a fine line between campaigning and harassment. One person's campaigning can be another person's harassment. At what point does campaigning become harassment?
Max Pemberton has conflated noisy activism with harassment. And he has conflated harassment with illegal activity. Harassment isn't necessarily illegal. For example, my mother used to harass me, so that I would get out of bed in the mornings. Many lobbyists legally harass their political representatives.
He doesn't suggest that there was much illegal activity. He indicates that there were some threats, but doesn't say how many. How many threats were there? Two or three?
What type and level of activity is proper and justified in terms of legal campaigning, is just a question of what each individual thinks is a proper and justified level of activism. No diverse group of people are ever going to see eye to eye about this.
If Max Pemberton is not going to write anything else about ME, ever, then quite honestly I'm very relieved.
His ignorance and bias is astounding.
His ignorance is partly demonstrated by his method of proving that an illness is psychological.
This is how I would go about it by the Max Pemberton method:
I would write an article in a national newspaper accusing all AIDS patients (just as a random example) of purely having a psychological illness, without any scientific justification for that accusation. I might have based my accusation on some research which a psychiatrist showed me, that demonstrates that some AIDS patients have to cope with psychological issues. Obviously, I would not bother reading any other scientific literature before I made the accusation. I then would expect to receive a certain amount of strongly worded dissenting emails, and a possibly one or two vaguely threatening emails, from AIDS patients. Thus, from their reaction and strongly worded protests, I have proved that all AIDS patients have a psychological illness.
Even though I don't agree with most anything you said IVI, I think your post is brilliant! The "Talibanisation" and "Alien Abductiontist" denigration is kind of novel I admit.
I think it is important to define "the community". I think it is fair to say whoever posts here is not considered part of "the community". The Aliens could be posting here for all we know!
I do think the community is divided, and "divide and conquer" is another effective tactic used against us.
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.
Any suggestions for effectively responding to the extremists who somehow spread this inflammatory "news" all over the place to sway public opinion?
I'm working on a blog post to try and refute this mental illness meme. Can anyone point me to some other stories/comments that either typify the meme or refute it? I've got Pemberton, and I know there was another series last week.
I recommend reading the comments after Michael Hanlon's blogs in the Daily Mail.
The comments are really high quality and put his journalism to shame.
Michael Hanlon wrote an initial blog and then two follow-ups.
In the same newspaper website, Sonia Poulton also wrote her excellent blog:
Michael Hanlon contacted the ME Association after his initial blog:
Excellent! Thank you, Bob.
You welcome. Were you looking for any other articles?
Sounds like he is basing his beliefs on hearsay. I found the post kind of funny. If I got a couple hundred threats, I would stop voicing my opinion about that something publicly. I believe this illness is not just psychological but components of it are involved. I don't get why people get so opinionated over such a hazy subject. The illness itself is under a brain fog that no one can define. I guess I just don't like outspoken know-it-alls.
The Hanlon series was the other one I was thinking of. Have there been any other egregious examples in the last week or so?
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.
I've had arguments and disagreements with people about XMRV, and various other subjects, but I know that we are all on the same side. We just have different ideas about how to go about getting the outcomes that we want. (When I say "all of us", I mean the vast majority of people I come into contact with.)
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.
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.
Saying that we have been 'systematically lied to for decades' inidicates neither paranoia or irrationality.
It is based on evidence and first-hand experience.
You only need to look at the PACE Trial (and the reaction to it, from the authors, the media, the Lancet, some in the medical profession, and the Science Media Centre) to see clear evidence of the facts being twisted and misrepresented.
I can provide you with evidence if you need it.
Not only have we been lied to, over the years, but we have been systematically medically neglected, maligned, and mistreated.
As I said in my earlier post, if Max Pemberton concludes that ME is a psychiatric illness because he has a post-bag full of protests from the public, then it says more about him than it does about ME patients.
How can opposition to a psychiatric definition be considered evidence that ME is a psychiatric disease? That's absolutely perverse.
I'm surprised that you think writing a protesting letter gives him ammunition.
In fact, all the complaints that he has received seems to have stopped him from writing any more about the subject. So the activism seems to have had a beneficial outcome. (I'm not condoning illegal activity.)
Campaigning, or activism, does not indicate 'fanatiscm'. Many of us campaign.
I've found plenty of integrity and consideration on this forum, so if you've not found it, then maybe you aren't looking.
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.
[quote="Tally, post: 298787, member: 5806
How convinient for him to say 'role of viruses' when only one has been proven to not be there. He makes it sound like this proves there are no viruses at all. This is such a manipulative way to speak!
And he has obviously been manipulated too spouting the cr@p of the psychs, this is just what they want to see, people will just read viruses and move on, this really shouldn't have been allowed, it is untrue and a fine piece of misleading journalism.
I can't think of any others, myself.
There were a couple of poor headlines, with very short articles and no substance in them.
I haven't got links, but I don't think they're worth following up.
I'm not aware of any other horrendous articles, but maybe others will be.
I think my favourite article was an interview with Lipkin, in Nature:
Maryb, Max Pemberton, the author of this article is a doctor who works in mental health. He is either training to be or is already a qualified psychiatrist and supports Wessley's flawed psychiatric hypothesis of m.e. I know he has spoken at conferences Wessley has and they may well be buddies. It's just so frustrating that he has such a platform through his weekly doctor column in a British national newspaper to promote his flawed views on M.e. and editors allow him. He wrote a bad piece on m.e last year too.
A quick google shows he is a fully qualified psychiatrist who specialised in psychiatry after doing general medicine. His newspaper column describes him as a doctor, conveniently omitting his speciality is psychiatry.
I will give one instance of how I think biased responses can be created and distort argument. I have become aware that something very simple has the potential to distort judgement. How many ever ever looked to see how many likes a post has? How many have clicked on the like button? How many have looked at the alerts at the top of the page and seen their comments liked?
Its possible for people to be influenced by "likes", rather than by reason or saying what they believe in. Over time this might subtly distort judgement. I am aware of the issues and trying to resist it. I appreciate when people like what I have to say, just as I like to let others know I appreciate what they have said by clicking on the like button for their post. However if we allow this to influence reasoning then we are at risk of group think.
This is not a criticism specifically aimed at PR or the ME community. Its equally valid for any forum, facebook etc. The internet is changing how we communicate, and we need to change our communication practices to deal with it.
PS This is in reply to IVIs earlier post, and something to ponder on.
There is no substantial evidence that ME is a psychological disease. But plenty of evidence otherwise. See page 29 onwards:
It's really not a hazy subject.
The presence of cognitive symptoms do not necessarily indicate a psychiatric or psychological illness.
For example, MS, Parkinsons, AIDS, cancer etc., can all have cognitive symptoms.
It is vital that a disease is correctly understood, so that it is treated appropriately, and the research is effective.
What is the point in carrying out psychological research into a physical illness?
The PACE Trial and the FINE Trial were perfect examples of this.
The FINE Trial demonstrated that CBT and GET are completely ineffective for ME patients.
The PACE Trial was similar, although it used a 'chronic fatigue' recruitment criteria.
The PACE Trial demonstrated that CBT and GET only benefited 13% of patients, at best, using subjective assessments. When using objective assessments, there were no clinically useful outcomes.
What an utter waste of valuable government research funding. Millions of wasted pounds/dollars that could have been spend on biomedical research.
There are good reasons why some patients protest against accusations that they have a mental illness, in a forthright manner.
The psychiatric lobby has successfully had a monopoly on UK government policy, for years, and they have blocked biomedical research funding.
If we sit back and let them have their way, then there will be no medical progress, and ME patients will continue to be treated as if they have personality disorders.
I think most of us want to see progress in biomedical research.
I think that nearly all of us would agree with that.
But it's not going to happen whilst there is a common view that ME is psychological in origin, and while biomedical research is being blocked.
I think that many of us think that frustration and anger are justified emotions, when we are continuously told that ME is a psychiatric disorder, against decades of evidence.
You are best though not mentioning this lest you are marked as a fanatic, malingerer.
Especially, do not use twitter for any messages as this could be construed as a threat to the author's life.
Whatever is being said about ME/CFS in context with psychology should be accepted as pure science.
Whether we protest it or not, the outcome is the same - we are fanatics and crazy fanatics to boot.
Bob, it isn't that articles like this don't disappoint me. It's the reactions to them from idiots of the sort referred to by Max that make me angry. I mean, yes, we could stick our fingers in our ears and pretend that there were no 'threats' of course - that's always an option.
If people start questioning the claims relating to obtaining Max's home address etc., the ones that prompted him to take steps against further harassment - it will not see 'us' heading in any positive direction. Indeed, it will - once again - serve to undermine any positive measures 'we' have gained from 'advocacy' (how ever the hell you measure that).
Clearly Ian, and others don't agree. But look at how the 'death threats' are still being dragged out and used today. Hardly a ringing endorsement of any 'community' action or spirit or indeed sanity.
Patient's with ME and their carers might indeed and quite rightly express their frustration at such articles - buoyed no doubt by the circling meme across forums and the like - but there is a clear line that shouldn't be crossed and the great majority don't. But clearly some do and clearly some feel there is nothing wrong with it.
Indeed if I recall correctly, such 'threats' and 'intents' as perhaps are being reported by Max are the target of new legislation going through the system following (or before) that incident with Tom Daly at the Olympics. And being disabled is no excuse and I don't really think that his article constitutes a 'hate crime' either - do you (peoplewithme.com)?
So I was suggesting that people didn't comment at all on that aspect of his article or certainly refrained from asking for 'proof'. To do so would be pointless and would only be seen to add to his argument and vindicate his article. Of course to condemn those behind such 'attacks' will see some 'members of the community' denounce me (and others) as being a 'traitor' I have no doubt. But such is life in this wonderful world.
Reading through the 'recommended' comments beneath his article you really have to wonder if there's any point replying to such articles at all. Do these comments change anything? Indeed, does Max's opine change anything? Is it important in the grand scheme of things? Am I any worse off tomorrow if I missed his article today? Will my treatment by the NHS be affected?
Here's one for you: maybe Max is in cahoots with that arse from the Daily Wail and together they decided he would respond to Sonia's article? Two pronged attack? Hmm...
There is a reason to comment on such articles, Firestormm. In most cases they will not change the attitude of the writer of the article. They also will not change the attitude of anyone who has made up their mind. There are two good things the comments do though. First they let patients know some of the issues that they can think about or investigate. Second, the provide information to anyone who is genuinely trying to make up their own mind. I don't encourage anyone to just accept anything in such posts - but there is enough information presented in a series of replies that a person who wants to learn more could easily run a search and find the information they need.The best way for someone to learn is to find out for themselves, to think the issues through on their own. Replies only give them pointers.
I must admit to being awfully bored with the likes of Wes, Pemb et al and their desperate need to keep ME in their field. Whatever happened in truth I've no idea - their problem anyway. Real medicine/science has overtaken them now, yet they continue to air their grievancies. Must say though I appreciate all those concerned with the creep of psychiatry which has held us back here over decades.
I did add a civilised comment to the Tel article but hope he will keep his head "below the parapet" for ME in the future as research findings gather pace.
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