Why few dare tackle the psychology of ME

[Esther12]

"hypochondriac ME community who're all mad, lazy and wasting YOUR welfare money!!"

Some of Pemberton's supporters took that approach, but Pemberton never did.

 

[SilverbladeTE]

Some of Pemberton's supporters took that approach, but Pemberton never did.

a canny rable rouser only needs point the rabble, and let them say the words the rabble rouser wouldn't dare, and thus, let the mob inflame and gnash!

 

[Enid]

What worries me about Pemberton's article is that he thinks psychology has any place in ME. In my long early severe days (encephalitis) with never before headaches, loss of recognition, memory, inability to speak nor stand, locked in with passings out - could psychology aid. Bunk. What did aid over time was Neurontin to epilepsy levels, recognised supplementation (thanks Rich) before things improved. Point is these issues are cognitive impairment and have nothing whatsoever to do with "psychology". He is dangerous to suggest otherwise.

 

[Esther12]

I think it's entirely possible that Pemberton's so clueless that he didn't realise his article would be used to support that sort of response. I've got no idea. Given the prejudices which already surround CFS, I think it could be argued that journalists have a particular responsibility to write about the topic cautiously and accurately, but I also think it's important to make it clear when one is targeting what an individual said, and when you are pointing to the responses it led to.

 

[Esther12]

What worries me about Pemberton's article is that he thinks psychology has any place in ME.

I think it depends upon how 'psychology' is defined and regulated. Given the quackery which surrounds psychological approaches to CFS, particularly in the UK, the involvement of psychologists has been deeply unhelpful, and has left me thinking that psychologists should be restricted to treating those patients with clearly identifiable cognitive distortions (this is a realy difficult topic to talk about concisely, and I'm still unsure of my own views). If psychologists were consistently better at their jobs, and more tightly regulated, psychological help could potentially be helpful to a wide range of people.

 

[Jarod]

Pemberton's only weapon is his newspaper access. He has newspaper access and can talibanize easy targets with financial and media support from the rest of his clan.

If the newspaper editors weren't selected based on phone hacking abilities, maybe Pemberton would have to resign to toilet paper instead of newspaper.

The media thrives on these kinds of distortions. It's kind of like the talibanization CNN does to Ahmadinejad every time they get a chance.

If one actually listens to the Ahmadinejad interview, instead of reading the truncated CNN quotes and catchy headlines. The whole picture of who Ahmadinejad is comes in to question.

The problem is, we don't have a TV station to respond to this trash.

Guys like Pemberton will be out of business when the truth gets out. (I think december 21 2012 would be a good day). The public just has to be educated on how the game works. Based on the comments here, the public is well on the way.

Once we get our news outlet, and all stop consuming the garbage. We can create a media response team to counter the clan's psy-ops campaign.

 

[Enid]

@ Esther 184 - I'm not knocking psychology here but psychiatry (Docs) misuse in ME. And to which this author feels free to build on personality "problems" etc to defend his stance. I did psychology at Uni - took me that to escape the "all your mind" Docs collapsed in A & E. So let's not concentrate too much on idiots - go forward on the widening understanding of the pathologies found and already being treated.

How come with all my intelligence intact though physically unable was in rather better form than those around me. Even the police stopped me (rare attempt) in the street and I had to reassure them I was OK.

 

[Roy S]

Yes she is I really appreciate what she is trying to do for us here in the UK however I think she may have already ruffled a few feathers so I would urge folks in the UK to get behind her 100% . She really does get it she knows how sick we are and how much we have been mistreated . I take my hat of to her Sonia has more balls than most blokes I know

yes, I think Sonia should be used frequently as an example of a good reporter in the UK who is treasured and not mistreated by the patient community. Her credentials in psychology are a bonus.


Thanks to the moderators for moving those off-topic posts to their own thread and leaving a link in this thread so they can be found easily.
As the moderator's guidance requests, I clicked the "report" button and suggested that, took a nap, got back online and presto-chango! It's like magic.
And you thought it was thankless job.

 

[Firestormm]

One letter was published. The author reports it as having been edited (heavily):

http://www.telegraph.co.uk/comment/...a-political-rather-than-practical-policy.html

ME and mental health
SIR – Max Pemberton asks “Why few dare tackle the psychology of ME” (Health, September 24). The reason ME sufferers object to being called mentally ill is that they are treated dismissively, and this dismissive behaviour is blamed for holding up research into a treatment for the disease.
Some mental illnesses are serious and neurologically based, such as bipolar disorder and schizophrenia. ME patients are not treated as if they have this kind of illness, but as if their condition was a trivial psychological disorder and they are wasting everyone’s valuable time.
The recent study Mr Pemberton is referring to does not disprove all viral links to ME; it was only ever about one specific type of virus, the murine leukaemia virus, the discovery of which raised a lot of (false) hope in 2009, but has been abandoned.
Matthew J SmithNew Malden, Surrey

 

[Enid]

"Mental health" - what on earth does mental health have to do with ME. We gave up the DT long ago (ah though we once enjoyed the gardening articles). What a game they play - whoever controls medicine there. One good writer James Le Fanu we only read.

Step forward the chief medical editor DT. Up with science - try it though we have long suspected limited capacities - journalism and sensation and sales and (quite personal) misguided luv in. But then I see this ignorance through 4 Docs in my own family.For obvious reasons this paper for us and friends around is no longer acceptable. A personal pleasure to walk past.

And I will never forgive those ignorant psychiatrists who held up and wasted UK resources since the Royal Free, influenced real medicine with their mumbo jumbo - how to make an illness disappear. One doesn't write without limited expended effort on this forum with any degree of pleasure except the truth.

 

[Roy S]

Sonia Poulton posted this on Heath Davies' facebook page:
Quote
"I think you are right about MP [Max Pemberton's article]...and I sense that our dear friend [SW] above may have had some hand in it in some way. Maybe, maybe not. Either way it doesn't deter me. I know the truth and that's enough to motivate me forward. There's nothing like clarity to give you strength of purpose and conviction. I kind of feel sorry for some people when the whole truth blows wide open - and it will, Heath. Some people are going to look so bad that the fall out will be unimaginable. Just to give you a heads up, and anyone else who may be reading this, one of my papers has given me the nod to research and present to conference the whole issue of child snatching in M.E. It's not a pretty picture, frankly. x"
　
(thanks to Patricia Carter for posting this on mecfsforums)

 

[Firestormm]

I wonder what

present to conference

means?

 

[Enid]

Bullshit probably Firestormm - stick with the best you have available there. (and of course the best we have here). Onwards and upwards.

 

[Mark]

Misunderstanding there I think, Enid, 'present to conference' refers to the post above by Roy S, it's a quote from the journalist Sonia Poulton who is on our side.

 

[In Vitro Infidelium]

I wonder what "present to conference"means?

Given the context - perhaps "editorial conference" -i.e decision on whether to run the story/ where to feature, when to run etc. The proposal sounds pretty ghastly to me, all the potential for a hyperbolic 'evil doctors/social workers stole my child' story with little potential for a studied examination of the difficulties M.E/CFS poses in terms of delivery of care from both parents and professionals to children and young people.

IVI

 

[user9876]

I wonder what

means?

I would assume its the editorial conference so if they back it it could be quite a decent story rather than a blog on the papers web site

 

[user9876]

Given the context - perhaps "editorial conference" -i.e decision on whether to run the story/ where to feature, when to run etc. The proposal sounds pretty ghastly to me, all the potential for a hyperbolic 'evil doctors/social workers stole my child' story with little potential for a studied examination of the difficulties M.E/CFS poses in terms of delivery of care from both parents and professionals to children and young people.

IVI

I think it is an important issue to talk about. Its a process started often by schools due to ignorance but sometimes doctors. Social workers are just tend to follow the advice of others - but too often do so unquestioningly, disbelieving the parents and giving them no information. The whole process can be very damaging to children who are expected to use all there energy on addional appointments, seeing socialworkers and attending child protection conferences. A bit like forced exersice but with additional fear. Then you get those doctors who threaten child protection if children don't do some form of GET. Sometimes parents get accused of FII or munchausans by proxy where certian psychiatrists are wheeled out.

A couple of academic case studies show some of the failings of the system. They are not ME related. One refers to a child with a brain tumor whose diagnosis was delayed because doctors a child protection issue (FII).

http://www.cjp.org.uk/EasysiteWeb/getresource.axd?AssetID=2602&type=full&servicetype=Attachment

http://www.la-press.com/misdiagnosi...-diagnosing-a-paediatri-article-a803-abstract

 

[Enid]

Thanks Mark at 194. I must read more, though difficult in the ignorance still surrounding ME in some quarters I believe started and continues by the psychiatrists - and they are Docs apparently - not my own here - 4.

Back to thread.

 

[biophile]

The volume of comments at the telegraph.co.uk article is overwhelming, and I was not going to bother with posting there, but factual inaccuracies about the PACE Trial must be countered. I just posted the following comment and am archiving here just in case it gets moderated:

URL: http://www.telegraph.co.uk/health/9...e-the-psychology-of-ME.html#comment-665227450

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I find it concerning for the standards of journalism in the UK that Pemberton still stands defiantly, in this article and subsequent tweets, by the claim that 1/3 participants of the PACE Trial "recovered" due to CBT/GET. Although he claims to be very interested in the research on ME/CFS, any plebeian with an internet connection can easily verify online with one click that Pemberton is absolutely wrong about this particular issue.

Just read the PACE authors' own statement on the issue ( http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext ), in which they confirmed in the Lancet on the 17th May 2011 that recovery was *not* reported in the paper in question. For those too lazy to even do that, or too prejudiced by the ongoing smear campaign against critics of PACE to accept the possibility that Pemberton could be wrong, here is the actual quote: "It is important to clarify that our paper did not report on recovery; we will address this in a future publication."

Now the question is, how did such confusion arise in the first place to the point where Pemberton is still claiming otherwise 16 months later and even clinging to the erroneous opinions of the PCC and the Daily Mail for support?

What was reported in the original paper and widely misinterpreted by others was a so-called "normal range" in self-reported fatigue and physical function. However, what the PACE authors defined as the thresholds for normal range in these measures was a statistical concept based on questionable normative data from general populations, and it is much different to the definition of recovery proposed in the original PACE protocol published in 2007.

Furthermore, due to post-hoc protocol changes during the trial, the goalposts were moved to the point where the "normal range" overlapped with the trial eligibility criteria for "disabling fatigue". In other words, it was possible for a participant to enter the trial with moderate CFS, show no improvement whatsoever or even decline slightly after 52 weeks, then be classified as being within "normal range" at followup and therefore deemed a success even without improvement.

And unfortunately, even though the word "recovery" does not appear in the paper itself, it was alluded to being equivalent. At the press conference on the results, the PACE author(s) spoke about patients getting back to normal lives; so it is understandable why audiences would confuse this for recovery, but it is simply incorrect as the authors themselves have later clarified, after receiving much criticism for suspected spin doctoring.

The only other possibility is that Pemberton was instead referring to the [clinical global impression] outcome, however, feeling "much better or very much better" is not necessarily a recovery either. Pemberton also failed to include control figures, giving a false impression about the reported figures.

Not only did CBT and GET leave participants as generally disabled as patients of other serious medical diseases for 6-minute walking test distance, but another PACE paper was published in August 2012 (PMID:22870204) which reported that CBT and GET had no significant effect on total service usage/costs, unemployment, welfare benefits, or other financial payments. All this seems rather unusual if 1/3 of the patients have supposedly "recovered".

These blunders described above were repeated in numerous medical journals and newspapers, including by Pemberton himself and even the editorial accompanying the 2011 Lancet paper on the PACE results. It is justified that patients and advocates have been frustrated over ongoing misleading claims about CBT/GET and for being contemptuously dismissed whenever pointing these out, and I hope Pemberton and others do not misconstrue frank attempts at correction as "harassment", extremism/militancy, or personality disturbances.

Such blunders also question the reliability of interpretations being made by medical professionals and journalists. To make matters worse for Pemberton's reliability as a journalist, he now claims in this article that XMRV or pMLV "had previously been isolated in tissue samples taken from ME suffers (sic)", but it was blood, not tissue. Will Pemberton now admit to errors, or could it be that he refuses to do so because "of the way society views" failure?

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[alex3619]

Hi biophile, on the isolation of XMRV from tissue, Pemberton has an "out". Blood is a tissue. The use of terms with multiple meanings is rampant in this debate, particularly from the biopsychosocial people. Also there were tissue based studies on XMRV, including Singh. Bye, Alex