Why few dare tackle the psychology of ME

[Bob]

If Pemberton as a professional is so sloppy as to have stated that tissue was involved in the Lipkin study, and 1 of 3 people in the PACE Trial "recovered" (previous article), and is now citing Nater et al (2010) on Twitter as evidence for personality disturbances, how can I have automatic confidence in any of his other journalism? And if he conflates critique with harssment as many other journalists have done, how can I have confidence that all those 200 people or so were actually engaging in harassment as opposed to critique?

I don't believe that the 200 people on Twitter were 'harassing' him, in my interpretation of the word, or in any legal sense. Maybe they were just having conversations between each other, posting a number of Tweets using his username, making reasoned arguments. Using someone's username in a Tweet doesn't mean that you are addressing a Tweet towards that person. It can just mean that you are discussing the person. These tweets happen to fill up a user's Twitter stream, so it can be annoying, but it's not the same as harassment. But even if aiming a number of Tweet towards him, it doesn't equate to harassment when using Twitter. It's not like email. On Twitter, if you use someone's username, it's not the same as sending them a message. It's just a Tweet that you post on your own timeline. It doesn't get sent to the other user's inbox. Another user can choose to read the Tweet, or can ignore it. You can 'block' people very easily and painlessly, so that you can't see their tweets. He has even stated on Twitter that he is blocking anyone who is Tweeting using his username now, because they fill up his twitter stream. i.e. it's inconvenient.

Twitter:
1. I've had to start blocking them now. It's too tedious having my mentions timeline clogged up with 1000s msgs from a few people.
2. Just having to block most people now - same as last time - as just gets pointless and feed gets overwhelmed.

So he is complaining about people discussing him, because it fills up his timeline. That's all.

Nice to see him engaging so constructively with the patient community.

For the record, I've looked through all the recent Tweets that include his username, and I don't think I've seen any that are abusive, rude, harassing, impolite or unreasonable.

You can see them all here:
https://twitter.com/i/#!/search/realtime/@MaxPemberton

I'm not very interested Max Pemberton. It's just that his article has raised some interesting issues.
Reading the Tweets that have been addressed to him, in the link given above, makes me think even worse of him than I did when I originally read his article, which is saying something.
'Harrassment' for Pemberton, looks like reasonable engagement to me.
I don't believe that there are 200 ME patients on Twitter who harrass others. Not in my interpretation of the word, anyway.
There are a lot of good people on Twitter, and I believe that they were attempting to engage with Pemberton reasonably, or were having conversations using his username. This inconvenienced him.

I believe that some journalists have profoundly misrepresented our community, in quite a nasty way.
And I'm surprised to see people in this thread blaming patients for the scurrilous behaviour of these journalists.
The blame should be placed firmly with the journalists who denigrate and attack the patients community, and promote misinformation for their own ends.

 

[Enid]

There is some good reading here (Prof Hooper 2011) which might help to clarify the psycho's shifty thinking.

 

[Enid]

In fact this site is full of good arguments in case anyone's not read. MEAssociation here.

 

[biophile]

Bob. Good point that he may have conflated some inconvenience with harassment. However, the situation apparently went beyond Twitter, he reported also being inundated with furious emails and letters, and mentions internet discussions about his house (which is when police became involved ie checked the security of his place and put his number and address on a ''high-alert’’ rapid response list). He claims those targeting him displayed an astounding degree of paranoia and obsession. The figure of 200 was for those on Twitter who were repeatedly sending "vile messages and emails".

Obviously we do not have access to the private emails, but is there any way we can access these older Twitter messages to see how vile they supposedly were? It is just that in all my years on the internet, there seems to be much worse abuse and trolling on non-ME/CFS issues compared to anything I have seen publicly online involving ME/CFS. And when the PACE Trial was covered in the news, a large proportion of the "vile comments" and outright insults in reader comments was actually directed towards patients for questioning the results and for supposedly having mental problems, and seemed to be worse than the supposed vitriol directed towards the PACE authors.

 

[currer]

The real problem with the psychiatric hypothesis is that it is used to block adequate biomedical research and treatment.

Therefore no-one with this illness can hope for treatment or amelioration of their symptoms.
Even children are exposed to potentially harmful quack "therapies"

Why is it any surprise that the ME community is angry at the way this disease is portrayed when that portrayal denies us the right to healthcare?
I am sure Mr Pemberton would himself expect to have an illness adequately treated were he to develop one.
Why are we not allowed that right?

You have to ask yourself why sombody is so desperate to stop research into the cause of ME.

 

[currer]

Why should a psychiatric hypothesis automatically prevent biomedical research anyway?
There is plenty of biomedical research into the causes of other psychiatric disease e.g. schizophrenia.

This is an irreconcilable conflict within the psychs own reasoning, as they themselves are continually emphasising in this very debate that body and mind are one.
.

 

[Holmsey]

Has anyone stopped to consider why insurance companies won't support psychiatric illness long term. Quite aside from cost, it's increadibly difficult to prove or disprove mental illness, for instance if you were to present 200 of us at random and ask a member of the public to pick the one that had a mental illness do you think they would guess that it was a trick question and that according to the insurance companies / psyc's viewpoint we are all mentally ill.
Insurance companies are like us, they like hard objective tests with black and white outcomes, you can't factor in premium v claims in a grey area, and if it's that difficult for an insurance company then nothin the Psyc's claim regarding mental illness can ever be taken to seriously.

 

[currer]

I also believe this ugly debate is being carried on through journalists in the gutter press (yes, the telegraph) because the psychiatrists involved know that they would be risking their reputations were they themselves to make these statements.

It is also probably a journalistic riposte to the Poulton article.

 

[Bob]

Bob. Good point that he may have conflated some inconvenience with harassment. However, the situation apparently went beyond Twitter, he reported also being inundated with furious emails and letters, and mentions internet discussions about his house (which is when police became involved ie checked the security of his place and put his number and address on a ''high-alert’’ rapid response list). He claims those targeting him displayed an astounding degree of paranoia and obsession. The figure of 200 was for those on Twitter who were repeatedly sending "vile messages and emails".

It's all down to interpretation, and the potential for exaggeration, isn't it.
(Are journalists generally known for exaggeration, and sensationalising?)
If I were to send him a few Tweets, to ask him some questions, would I count as being 'obsessed'?
If I were to send a (justified) indignant letter to his editor, then would that count as 'angry harassment'?

After reading all the recent Tweets, I find it hard to believe what I read in his article, in terms of the way he is portraying the response to his article.
After Wessely's almost identical portrayal of ME patients, it seems like it might be a plan to denigrate ME patients, with a specific outcome in mind.

But I agree with those who have said that it probably wouldn't be productive to challenge his claims, because it's all down to subjective interpretation.
Best to stick to the facts about ME.

Obviously we do not have access to the private emails, but is there any way we can access these older Twitter messages to see how vile they supposedly were? It is just that in all my years on the internet, there seems to be much worse abuse and trolling on non-ME/CFS issues compared to anything I have seen publicly online involving ME/CFS. And when the PACE Trial was covered in the news, a large proportion of the "vile comments" and outright insults in reader comments was actually directed towards patients for questioning the results and for supposedly having mental problems, and seemed to be worse than the supposed vitriol directed towards the PACE authors.

Yes, my eyes were opened when I read the recent Twitter stream of Tweets addressed to Pemberton.
All were reasonable, considered, engaged, polite. etc. Quite the opposite to how I perceive Pemberton's articles to be.

It is possible to see all Tweets addressed to Pemberton, using the link I gave earlier.
https://twitter.com/i/#!/search/realtime/@MaxPemberton
I don't know how far back you can go in time.
Any offensive Tweets, if there were any, could have been removed, if they were reported as being abusive, and so it's not possible to see any that have been removed by Twitter. So the current Twitter stream might not give a fair representation of what went on in the past.

 

[Enid]

I think from the more recent articles in the Telegraph that Pemberton et al have their own agenda bound up in all this. It has to with profiling "mental illness" to the public generally. Our (ME) opposition to the psychiatric framework provides him with "told you so - you are just part of the whole stigmatising unaccepting stupid public". Whereas we are accepting of the existance of "mental illness" it just does not apply to ME.

 

[Esther12]

There is some good reading here (Prof Hooper 2011) which might help to clarify the psycho's shifty thinking.

I think some of those quotes are taken misleadingly out of context. eg: "In 1990 Wessely asserted that ME exists “only because well-meaning doctors have not learnt to deal effectively with suggestible patients” (Psychological Medicine 1990:20:35-53).

I'm pretty sure I've looked that up before, and that it's not a fair reading of what was being said.

Having said that, it looked like a better piece than I expected. As ever though, it's always best to try to check original sources.

Bob. Good point that he may have conflated some inconvenience with harassment. However, the situation apparently went beyond Twitter, he reported also being inundated with furious emails and letters, and mentions internet discussions about his house (which is when police became involved ie checked the security of his place and put his number and address on a ''high-alert’’ rapid response list). He claims those targeting him displayed an astounding degree of paranoia and obsession. The figure of 200 was for those on Twitter who were repeatedly sending "vile messages and emails".

Obviously we do not have access to the private emails, but is there any way we can access these older Twitter messages to see how vile they supposedly were? It is just that in all my years on the internet, there seems to be much worse abuse and trolling on non-ME/CFS issues compared to anything I have seen publicly online involving ME/CFS. And when the PACE Trial was covered in the news, a large proportion of the "vile comments" and outright insults in reader comments was actually directed towards patients for questioning the results and for supposedly having mental problems, and seemed to be worse than the supposed vitriol directed towards the PACE authors.

I've looked through the link Bob posted, and while there were some silly tweets, generally the most aggressive and disdainful ones seemed to be aimed at CFS patients, rather than coming from them. Also - Pemberton talked of 1000s of tweets. Does that mean lots of them aren't visible on that link? It seemed like there were nowhere near that many. Are the bad ones hidden somehow?

Pemberton said pictures of his house were easily found on-line... it could have just been some people who thought his article was rubbish discussing his house, which they easily found a picture of when googling him. Bob's right to point out that Pemberton seems to feel harassed simply by people politely disagreeing with him. If Pemberton was contacting the police about what he saw as a dangerous conspiracy against him, a media personality, then sending a couple of officers around and telling him that they would put his number on a 'high alert' list could just be the police service's equivalent of giving a patient a sugar pill: "Calm down dear". I understand Fire's point about it looking bad to question assertions of harassment, and politically it's probably not a good idea, but that's largely because there are already such prejudices around CFS.

There are a lot of rightfully angry CFS patients, and some of them express themselves in stupid ways. The same thing occurs with any badly treated group of people. Maybe Pemberton was dealing with serious threats against him, but we've got no way of knowing. Given the misleading claims he has made about CFS, it's difficult to just assume he was fairly representing the response he received to his article. He does seem to be keen to present himself as heroically taking on powerful and dangerous CFS patients, despite not being able to deal with a few tweets pointing out that he's made some mistakes.

 

[biophile]

Evidence that Pemberton is wrong about the PACE Trial (he still claims that 1/3 "recovered")

I have just been made aware of a few tweets which confirm to me that Pemberton's understanding of the PACE Trial results is questionable and so is that of the PCC which investigated his previous article and upheld its accuracy.

In the previous article of his in question (http://www.telegraph.co.uk/health/8641007/Protesters-have-got-it-all-wrong-on-ME.html), he claims the following about the PACE results:

A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach.

Although the sentence can be interpreted as 1 in 3 participants either improved or recovered rather than just recovered, "normal range" was not necessarily a measurement of improvement because it overlapped with trial eligibility criteria, assuming his statement is based on that rather then clinical global impression, and the paper did not report on recovery. [edit: in a later post, Esther12 points out that the word "improved" did not exist in a previous version of the article] Furthermore, I found evidence that Pemberton stands by the claim that 1/3 participants "recovered" in the PACE Trial.

I find Twitter annoying and difficult to navigate to find URLs. However, the next part of my post is about these tweets, it starts when someone elsewhere confused Pemberton for Rod Liddle:

Max Pemberton ‏@MaxPemberton: just been pointed out to me people are now accusing me of calling people with ME 'malingering mentals'. WTF?! People literally make stuff up

Erica ‏@ImAnApeAreYou @MaxPemberton: Like when you claimed PACE showed that at least 1 in 3 patients with ME recovered using GET/CBT? Why did you say that?

Max Pemberton ‏@MaxPemberton @ImAnApeAreYou : er because it was true. As shown by the trial data and my referencing this in article was upheld by PCC

https://twitter.com/MaxPemberton/status/250707274715258880

He stands by these claims in similar tweets (https://twitter.com/MaxPemberton/status/250388408730521600) where he even cites a Daily Mail article for support, which states that "The treatments enabled at least one in three people to recover from the disorder, which leaves many bed-bound or in a wheelchair."

Anyone who stands by the claim that 1/3 participants in the PACE Trial "recovered" is clearly ignorant. The PACE authors themselves confirmed in the Lancet that recovery was not reported. In fact, we are still waiting on this data 19 months later.

It also makes me cringe to see Pemberton relying on the PCC and the Daily Mail to back his interpretation of research and avoid further discussion of the situation rather than double-checking the actual research paper in question, especially after claiming that "I’m very interested in the subject and have followed the medical literature on it for years." (http://www.telegraph.co.uk/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html)

 

[Esther12]

This image illustrates some of the changes made in Pemberton's original article, from it's initial release, to the later version. The "improved or" was a later addition. It really seems that CBT and GET are as highly effective as they have been spun to be - therefore patients claiming otherwise must be unreasonable, and motivated by a fear of psychiatry. He's a fine example of the British medical response to CFS.

 

[Firestormm]

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

Whilst I 'like' the thrust and language of your comment here, IVI, I have to say that the readership of the Telegraph you describe is to me rather dated. Pemberton's piece was (I believe and therefore may be wrong) online only. Now if we are talking the printed edition of the Telegraph then the audience may well remain as you describe - but online and with specific reference to those who both read and comment - I think there may be more 'lefties' and 'youngsters'.

Indeed, as a long-time Telegraph subscriber (both paper and internet - along with other papers - though exclusively internet these days) I have to say that since it went online there has been a noticeable 'dilution' of 'right-wing' comments. Or to be more 'precise' in my assessment - the number of 'right-wing' views expressed gets knocked out of the park (on occasion) by 'the lefty' challengers.

of course the predominant view expressed by the journalists and columnists remains exclusively (IMO) 'conservative, but, if the internet has done one thing - I think it's brought the 'two sides' together and out into the open. However, these 'lefty' comments are 'provoked' and I suspect viewed in exactly the same fashion as the stick Max poked in the ant nest. It it a common tactic similarly employed by the likes of Rod Piddle.

 

[Firestormm]

Evidence that Pemberton is wrong about the PACE Trial (he still claims that 1/3 "recovered")

I have just been made aware of a few tweets which confirm to me that Pemberton's understanding of the PACE Trial results is questionable and so is that of the PCC which investigated his previous article and upheld its accuracy.

In the previous article of his in question (http://www.telegraph.co.uk/health/8641007/Protesters-have-got-it-all-wrong-on-ME.html), he claims the following about the PACE results:



Although the sentence can be interpreted as 1 in 3 participants either improved or recovered rather than just recovered, "normal range" was not necessarily a measurement of improvement because it overlapped with trial eligibility criteria (assuming his statement is based on that rather then clinical global impression) and the paper did not report on recovery. Furthermore, I found evidence that Pemberton stands by the claim that 1/3 participants "recovered" in the PACE Trial.

I find Twitter annoying and difficult to navigate to find URLs. However, the next part of my post is about these tweets:



He stands by these claims in additional tweets (https://twitter.com/MaxPemberton/status/250388408730521600) where he even cites a Daily Mail article for support, which states that "The treatments enabled at least one in three people to recover from the disorder, which leaves many bed-bound or in a wheelchair."

Anyone who stands by the claim that 1/3 participants in the PACE Trial "recovered" is clearly ignorant. The PACE authors themselves confirmed in the Lancet that recovery was not reported. In fact, we are still waiting on this data 19 months later.

The 'malingering mentals' was I believe Rod Piddle. It is a great shame to me when people who criticise get their own facts wrong.

Edit:

Indeed, it only serves to add to the initiator's impression in this instance I would argue. Sorry, am slowly reading through the thread. The same goes for any comment one might make. If one limits one's reply to the factual inaccuracies in said article - then surely it undermines the author's credibility. When one ventures into the area of 'personal opinion' then that is what (particularly with our condition) I tend to think weakens any argument.

Another thing to come from the above comments and from the comments beneath the Telegraph article - is the straying into the 'collective field'. Why oh why don't people stick to their own personal experiences? Whenever I see the word 'we' being invoked as some expression of authority or for purposes that are deemed to be 'representative' I visibly cringe.

What's so wrong with using 'I' or saying 'in my experience'. Do people think it weakens their argument? Personally I would say it can only strengthen it when straying from factual evidence. Indeed, if you are legitimately stating your personal experience - it might be anecdotal but it can hardly be challenged to the same extent as a comment invoking the collective - can it?

Anyway, back to my reading. It's become a highly interesting thread. Thank you.

 

[biophile]

Phil Parker weighs in on the Pemberton controversy:

http://officiallightningprocess.blogspot.co.uk/2011/08/daily-telegraph-article-on-me-research.html

Enjoy.

 

[user9876]

I've looked through the link Bob posted, and while there were some silly tweets, generally the most aggressive and disdainful ones seemed to be aimed at CFS patients, rather than coming from them. Also - Pemberton talked of 1000s of tweets. Does that mean lots of them aren't visible on that link? It seemed like there were nowhere near that many. Are the bad ones hidden somehow?

I've come to the conclusion that like many doctors he has a god complex and doesn't like to be challenged. I think he expects to be believed and doesn't like the acuracy of his comments to be questioned. It seems strange to me that doctors are like that - comming from a scientific background I would expect everything to be challenged. I know such conversations enhance understanding and can lead to innovation. Some doctors seem to work in a strict hierarchy which doesn't encourage debate particularly from patients who are deemed to know nothing.

Hence tweets questioning his knowledge and statements really annoy him. What I find more worrying is the number of doctors egging him on.

If Pemberton was contacting the police about what he saw as a dangerous conspiracy against him, a media personality, then sending a couple of officers around and telling him that they would put his number on a 'high alert' list could just be the police service's equivalent of giving a patient a sugar pill: "Calm down dear". I understand Fire's point about it looking bad to question assertions of harassment, and politically it's probably not a good idea, but that's largely because there are already such prejudices around CFS.

My guess is that there wasn't sufficient of a threat to warrent police resources in an investigation as compared to their other work at that time. But the police need to take threats seriously so have a sort of fail safe mechanism so that they can respond quickly if anything were to happen.

 

[user9876]

Evidence that Pemberton is wrong about the PACE Trial (he still claims that 1/3 "recovered")





Although the sentence can be interpreted as 1 in 3 participants either improved or recovered rather than just recovered, "normal range" was not necessarily a measurement of improvement because it overlapped with trial eligibility criteria, assuming his statement is based on that rather then clinical global impression, and the paper did not report on recovery. [edit: in a later post, Esther12 points out that the word "improved" did not exist in a previous version of the article] Furthermore, I found evidence that Pemberton stands by the claim that 1/3 participants "recovered" in the PACE Trial.

)

I would have assumed he justified his claims by pointing to the Lancet editorial that did claim recovery.

 

[Bob]

Phil Parker weighs in on the Pemberton controversy:

http://officiallightningprocess.blogspot.co.uk/2011/08/daily-telegraph-article-on-me-research.html

Enjoy.

I am surprised when these protestors use their version of 'what science is' to state " the mind and brain can't influence physical health".
This simply isn't true.
There are many pieces of good scientific research that say otherwise.
This one http://www.nhs.uk/news/2011/08August/Pages/study-links-depression-and-stroke-risk.aspxwas published this month. Depression linked to increased strokes= mental wellbeing affects physical tissues

Hmm... "Depression linked to increased strokes = mental wellbeing affects physical tissues" ???

Maybe people with depression get less exercise than people without depression, and maybe people with depression don't eat as healthily as people without depression, and the less healthy lifestyle leads to worse health, leading to an increased risk of stroke?

 

[Bob]

I've looked through the link Bob posted, and while there were some silly tweets, generally the most aggressive and disdainful ones seemed to be aimed at CFS patients, rather than coming from them.

Yes, I came to the same conclusion.

Also - Pemberton talked of 1000s of tweets. Does that mean lots of them aren't visible on that link? It seemed like there were nowhere near that many. Are the bad ones hidden somehow?

I don't know if we are able to scroll down to see the Tweets from last year, because I haven't tried.
But, in theory, the link that I provided should show up all Tweets with Pemberton's username in them.
So it should show everything that ends up in his personal Twitter stream.
Possibly, if he has reported any, as abusive, then they might not show up, and if any accounts have been deleted, then they wouldn't show up.

What I find more worrying is the number of doctors egging him on.

Yes, it's quite disturbing isn't it. I guess that they are just taking his article at face value.