BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

[Denise]

"Essex CFS Service apologise for letter to the BMJ | ‘naive’ of authors not to consider wider implications| 20 June 2014
This just in in response to our complaint sent earlier today.
Dear Dr Shepherd

Thank you for your email.

The article you refer to has not been sanctioned by the Essex CFS/ME service and does not represent the views of the Essex CFS/ME service or Southend University Hospital NHS Trust.

It also does not necessarily represent the views of the authors.

In the first instance, I have instructed the Trust’s communication department to contact the BMJ to remove any reference to the Essex CFS/ME service and Southend University Hospital from the response. "
...
http://www.meassociation.org.uk/201...-to-consider-wider-implications-20-june-2014/

 

[biophile]

Next someone will be claiming that they had to remove the article because they were bullied by the ME Association?

 

[SOC]

View attachment 7618

I wish I could multiple like that! Do you have a link for that Discussion graphic. I REALLY need it.

 

[SDSue]

I wish I could multiple like that! Do you have a link for that Discussion graphic. I REALLY need it.

Sure. I should have included it. I've seen it in various places, so I don't know origin. Isn't it fabulous! http://twentytwowords.com/a-flowchart-to-help-you-determine-if-youre-having-a-rational-discussion/

 

[SOC]

It also does not necessarily represent the views of the authors.

That has to be one of the most idiotic positions I've ever heard. They wrote the article, put it up on the BMJ RR, but it isn't really what they think, they were just making it up for the fun of it (and to insult patients).

What it probably really means is: They weren't supposed to let patients know what we really think. If patients know in advance what we believe about them, they won't come here and we'd lose our cushy jobs.

 

[biophile]

Sometimes ...

https://twitter.com/theagilepirate/status/471655978468122625/photo/1

 

[Sean]

The article you refer to has not been sanctioned by the Essex CFS/ME service and does not represent the views of the Essex CFS/ME service or Southend University Hospital NHS Trust.

It also does not necessarily represent the views of the authors.

...

It does not reflect the authors’ views on the realities of living with, managing or treating CFS/ME.

What a bunch of gutless crap.

 

[Sean]

Dispicable fuckweasels...

 

[alex3619]

They are basically covering their backs with NICE guidelines. As long as those guidelines are as bad as they are, those psychos are practically untouchable.

I am not sure this is right. I think they want us to believe this is right. NICE guidelines are, clearly, only guidelines, they are not enforceable, though a lot of pressure will be brought to doctors who buck the guidelines. They do NOT remove responsibility from individual treating doctors. Now actually taking a doctor to court, that might be hard. Its a tough fight usually. However it does not take much to lodge a formal complaint somewhere, or a lot of somewheres.

 

[alex3619]

It would be interesting to see what happened to psychogenic proponents of MS once MRI scans sealed their fate. Just washed their hands and found another group to abuse?

Yes, I was thinking about this just last night! It would make an interesting investigation. That last part is right though ... they move on to the next group to abuse. This has happened so many times its fair to call it a pattern, I think.

 

[alex3619]

Let me point out that the meme that ME is a psychogenic disorder is very old. The meme of psychogenic causation goes back to antiquity, but was first formalized by Charcot with a formal definition of Hysteria. It was Simon Wessely who said something like (and this might not be an exact quote) "ME is simply the idea that someone has ME." That is the same idea. A meme is just an idea, one that propagates because it fits with other ideas. Ideas like the mind can cause disease. Ideas like we can externalize with physical symptoms our internal emotional or cognitive problems.

There are many layers of factors that reinforce these ideas. Many patients have issues with insurance companies, for example, but insurance companies are only one factor reinforcing all this. Its the same for schools of psychiatry ... one factor in many. Teasing all this out, asking the right questions, is what I hope to do in my book if I am ever well enough to finish it.

 

[alex3619]

Oh dear, psychogenic medicine is really about the gaps in knowledge. Its STILL being claimed that MS has psychogenic components.

http://www.theglobeandmail.com/life...hen-the-mind-causes-real-pain/article9265237/

Canadian expert Anthony Lang, director of the division of neurology at the University of Toronto, says the prevalence of psychogenic illnesses may be greatly underestimated. Even patients who have organic neurological problems, such as Parkinson’s disease or multiple sclerosis, often have what is called “psychogenic overlay” or “functional overlay,” where they experience enhanced symptoms or additional symptoms that are unrelated to their primary problem, he says.

In some cases, the underlying psychological triggers are never found. For this reason, Lang and other experts are arguing that the label “psychogenic” should be scrapped in favour of the term “functional neurological disorders.”

The good news is that it is possible for patients to make a full recovery with proper treatment, which may include medication, psychotherapy and physiotherapy. But Lang notes that an early diagnosis is important; continuous testing and consultations tend to reinforce and prolong the illness, he says.

(My bolding)

I do note that "functional neurological disorders" is becoming a common buzzphrase used in the UK according to the reports I have been getting.

Evidence for psychobabble is like the man on the stairs, who wasn't there:

The other day upon the stair,
I saw a man who wasn't there,
He wasn't there again today,
My gosh I wish he'd go away!

Looking at the case for MS being claimed as psychogenic, and the consequences, would be a good topic for a new thread.

 

[alex3619]

http://forums.phoenixrising.me/inde...being-claimed-as-partially-psychogenic.30992/

This is the MS psychogenic thread.

 

[daisybell]

I knew I was somehow getting it all wrong.... Of course you can have a psychogenic overlay without any psychological trigger!! You need to progress to being an expert, in charge of a division, to know this.

That makes perfect sense. Brilliant!

 

[Ecoclimber]

At first, I thought this demagogical rant piece was written or influenced by UNUM. One wonders, hmmmm....

Perhaps the insurance industry fear that they are losing ground to the scientific research community and need to bring in reinforcements from their psychobalists' friends.

One wonders how many more paid shills will pop up in the future to disparage the ME/CFS patient community and to discourage those intrepid souls in scientific research who are trying to find the cause of ME/CFS. It's almost like playing wack-a-mole with these guys.

 

[SOC]

UK NHS doctors don't usually accept our "postive" lab results. It's simply not relevant to them if they are presented with a folder of printout from labs that are not NHS ones.

The UK is a magnificent country. It is, however, a relatively small piece of a large world. What kind of thinking allows them to dismiss the knowledge of the entire rest of the world simply because it didn't originate in their little corner of the world? I am sincerely baffled by this

The doctors who do regard ME and CFS as being psychosomatic diseases regard the USA/UK doctor who are ordering the tests and treating patients as colluding with our delusion that we are sick or charlatans exploiting this.

I can see how they could delude themselves into thinking extensive testing for exclusionary conditions, which would be expected to come up negative if the patient has ME, is colluding with delusional patients, but how can positive test results showing clear abnormalities be seen as colluding with a delusion? Are the positive test results themselves a delusion? Are the doctors, labs, and lab equipment all caught up in some kind of mass hysteria that magically makes lab test results abnormal? Deluded machinery colluding with hysterical patients? Patients with the mental power to alter lab testing to produce false results? May I ask -- just where is the delusion here?

 

[A.B.]

Oh dear, psychogenic medicine is really about the gaps in knowledge. Its STILL being claimed that MS has psychogenic components.

I think the name for faith based explanations used to fill gaps in our knowledge is "superstitions".

 

[Sean]

Patients with the mental power to alter lab testing to produce false results?

I just use The Force. Works every time.

Persistently raised alkaline phosphatase, and erythrocyte sedimentation rate, as measured several times over 30 years, in multiple independent labs? Piece of cake. Undergrad party trick. A mere trifle.

Though I still haven't figured out who The Chosen One is in all this.

 

[Valentijn]

Though I still haven't figured out who The Chosen One is in all this.

The first one to grow a third arm using their miraculous psychogenic powers, obviously!

 

[SOC]

Though I still haven't figured out who The Chosen One is in all this.

I propose a fair and impartial contest to select our Chosen One. The person who can produce the most abnormal lab results gains the honor. In order to manage such a feat, the candidate has demonstrated not only the mental power to alter laboratory testing to suit their delusion, but they must have drawn physicians into their delusion firmly enough to get them to order the many tests presented.

Should a tie-breaker be necessary, the number of different doctors deluded, the number of different laboratories mentally manipulated, and the number of different fields (exercise physiology, infectious disease, immunology, cardiology, endocrinology) represented by those doctors and laboratories should be taken into consideration.