CFS at British Association For Behavioural And Cognitive Psychotherapies (BABCP) conference 2016

[msf]

Would it appropriate to point out that, in their defence, the authors are as dumb as shit?

 

[JaimeS]

If the intent is to use the long term follow up to say how the treatments work then the honest interpretation would be to say they don't work in the long term.

'Honest'? What is this 'honest' you speak of?

My word processing programme's Autocorrect feature has an option, after Spelling and Grammar, marked 'Tell the Truth?' I ran that Chalder intro through it and it came out as:

Brilliant, @sarah darwins, and more grammatically correct. I think you should submit it to them with the note that you found some errors in the writing.

Would it appropriate to point out that, in their defence, the authors are as dumb as shit?

Never sure if they are really this slow, or if they think the average patient is. I mean, it could always be both, right? How on earth can you publish something with all these glaring factual inconsistencies and a preponderance of grammatical errors that show you didn't even care enough to give it a second glance, without firmly believing that the patient population are a bunch of credulous morons?

*sigh*

-J

 

[msf]

I think they really are a bit slow (although I prefer my phrasing) - if they weren´t, they would have already started altering their arguments to try and make out that they never really believed in a pure psychosomatic model of ME.

 

[skipskip30]

I think they really are a bit slow (although I prefer my phrasing) - if they weren´t, they would have already started altering their arguments to try and make out that they never really believed in a pure psychosomatic model of ME.

Hasnt Wessely been doing just that? Maybe its like the Chinese story of the cat teaching the tiger. Teach them everything apart from the last trick of climbing the tree to escape. He can ultimately blame them and get away with it all.

 

[msf]

That´s what I mean, the authors are dumber than Wessely.

 

[Large Donner]

The clue to all of this is the organisation she is addressing.

The British Association for Behavioral and Cognitive Psychotherapies.

This is basically like any AGM that addresses its minions and hypnotizes them on how the executive board have decided to attempt to monopolize a market.

Its also to reassure the audience members that what they do is useful and that they are somehow elitist and at the top of their field.

Right or wrong moral or not the plans for the forthcoming financial year are laid out to the workers and the workers are prisoners for the duration of the meeting.

Very see through, this is not a scientific presentation its a market based meeting where everyone is programmed to realize they have to "all pull together in one direction" or they lose market share and income.

The high priests and priestesses stand on stage making pronouncements and the audience either lap it up or just sit there bored out of their minds for the free tea and coffee, a bit of luke warm meat at lunch time and some mediocre roast potatoes, before returning to their work places and doing the same thing they always did.

 

[tinacarroll27]

We need a law passed that say a treatment can't be used on the NHS for patients, when the treatment is based on research were there were vested interests and if there are vested interests in a research paper, then the treatment can only be used on the NHS if the research was verified by an independent researcher who had no connection with the original authors and no connections to the vested interests. This would shut the PACE trial authors up!!

 

[A.B.]

We need a law passed that say a treatment can't be used on the NHS for patients, when the treatment is based on research were there were vested interests and if there are vested interests in a research paper, then the treatment can only be used on the NHS if the research was verified by an independent researcher who had no connection with the original authors and no connections to the vested interests. This would shut the PACE trial authors up!!

Vested interests can be hard to prove.

It's simpler to say that treatment must either have been proven effective in a placebo controlled trial, or proven effective with objectively measurable outcome measures largely immune to placebo effects.

That would shut the door to all this mind over body quackery that elies entirely on conflating the placebo effect with treatment effect. Goodbye homeopathy, CBT for disease, etc.

 

[K22]

This makes me so angry. I'm severely diababled, with multiple symtoms. Putting our illness On a spectrum with tiredness& talking about anxiety and emotions & mood :-(. Ignoring the vast wealth of other important things, like other symptoms, severity, biomedical research, drug trials.. & churning out the same old for the near 25 years I have been sick. Self help books - oh yeah the one by Chalder with a smiley busy bee on it overcoming fatigue or something.

 

[alex3619]

Would it appropriate to point out that, in their defence, the authors are as dumb as shit?

I would prefer to say something like "ideologically derailed".

 

[Hip]

I cannot see that there is problem with placing fatigue on a continuum, because that continuum also exists within ME/CFS itself. The fatigue I am feeling today for example, it nothing in comparison to the severest fatigue that I had at my worst stage of ME/CFS, which was like having all the life-force drained out of me such that I felt I was hovering just a fraction above death.


The major shortcoming, though, I see with all the ME/CFS research performed at King's College is that it rarely if ever seems to address and investigate the underlying neurological abnormalities that likely give rise to the fatigue symptoms, the neurocognitive symptoms, and the neuropsychological symptoms of ME/CFS.

The King's College researchers only seem to investigate ME/CFS at the level of mind, but make no attempt to link the symptoms that appear in the mind to underlying neurological or immunological dysfunction in the brain.

Yes, there are emotional symptoms in ME/CFS, such as emotional sensitivity to social discord, but what these researchers should be looking at is how such symptoms are created through neurological dysfunction.

For example, hypothalamic-pituitary-adrenal (HPA) axis dysfunction is found in ME/CFS, and the hypothalamus, which is part of the limbic system, plays a role in emotional functioning. So why aren't King's College investigating the possible connection between HPA axis dysfunction and the emotional symptoms found in ME/CFS?


I can appreciate that not all psychologists or psychiatrists are versed in neurology or immunology, and thus lack the knowledge base that would enable them to work both at the level of mind and at the level of brain, in order to tie both together. But rather than ignoring the brain in their research, the King's College researchers should team up with neurologists and immunologists, in order to get the full picture, and actually start to do some useful research that links the neurocognitive and neuropsychological symptoms to what is going on in the brain.

 

[Scarecrow]

I cannot see that there is problem with placing fatigue on a continuum, because that continuum also exists within ME/CFS itself.

Well, I can't fault you for giving someone the benefit of the doubt but I think one of the problems is that it's an attempt to normalise what is abnormal - just as Walitt did in that Family Practice News interview:

http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/

Interviewer: Do we have any idea, yet, what narrative might be more useful?

Dr. Walitt: Ah, that’s a tough question–the problem is that language is so heavily charged. People are not willing to accept the idea that our emotions affect our sensation, right, the idea that mind itself is able to create these things and that all experience is a psychosomatic experience. Nothing exists without your brain creating those sensations for you and the idea that that process of creation can create these things and is supposed to create things like this to inform us and to teach us and to guide our behavior pushes against the idea that we have free will and that we can do whatever we want and that we should be able to lead the lives that we have always thought we should lead–not the ones that our bodies are restricting us to. And so accepting those kind of ideas is not so easy–that might make it a little bit easier on everybody; that might be a more palatable narrative, understanding that, you know, people can feel bad for no real fault of their own, because of the circumstances of lives and how brains just work–the way it’s supposed to be–as opposed to being sick. There’s a wonderful line from this gentleman Joel Higgs, “When people are atypical, societies do one of three things: They either medicalize, criminalize, or moralize.” And so when you find people with thing like fibromyalgia, you’re either going to be sick, bad, or weak–and the idea is really to find a fourth way–to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human.

Another problem is that they have once again distilled ME/CFS into just fatigue.

The fatigue I am feeling today for example, it nothing in comparison to the severest fatigue that I had at my worst stage of ME/CFS, which was like having all the life-force drained out of me such that I felt I was hovering just a fraction above death.

I understand what you are saying but is the fatigue you are feeling today anything like the worst you ever felt pre illness?

 

[Hip]

Well, I can't fault you for giving someone the benefit of the doubt but I think one of the problems is that it's an attempt to normalise what is abnormal

I see your point, and what you are saying is definitely pertinent when it comes to some none-too-bright members of the general public who assume ME/CFS fatigue is similar to the fatigue healthy people may experience after a day's work for example — of course we know that there is no comparison.

We have all had incredulous acquaintances say to us "fatigue, yeah, I get tired sometimes, but I manage to carry on". So it is definitely not a good idea to talk about fatigue in the healthy and ME/CFS fatigue in the same sentence.

Though the way I read it, Chalder is not talking about fatigue in healthy people, because her continuum starts with "fatigue as a symptom," so presumably she is talking about other illnesses (like say rheumatoid arthritis) where unnatural levels of fatigue can appear (though in these illnesses the fatigue may never be as bad and disabling as the fatigue that can appear in severe ME/CFS).


I think it might be a good idea to research the biological mechanism behind the fatigue in all illnesses where it manifests as a symptom, because there may be a common pathophysiology that differs only in severity. It is quite shocking really that we know so little about how unnatural levels of fatigue as a symptom is caused. That's another gap in medical knowledge.

But King's College are not going to able to undertake such an investigation into the pathophysiology of fatigue as a medical symptom until they start working with neurologists and immunologists.

 

[A.B.]

Though the way I read it, Chalder is not talking about fatigue in healthy people, because her continuum starts with "fatigue as a symptom," so presumably she is talking about other illnesses (like say rheumatoid arthritis) where unnatural levels of fatigue can appear (though in these illnesses the fatigue may never be as bad and disabling as the fatigue that can appear in severe ME/CFS).

They mean that fatigue is a normal experience with a spectrum of severity, with CFS at the extreme end. It's an attempt to downplay and "normalize". They have to, because otherwise it would be a disease and not a psychological problem. If they want to claim CFS as their turf, they must portrait it as psychological thing.

 

[Hip]

They mean that fatigue is a normal experience with a spectrum of severity, with CFS at the extreme end.

Where are you reading that? What I read is this:

Fatigue is best viewed on a continuum with fatigue as a symptom at one end of the spectrum and chronic fatigue syndrome (CFS) associated with profound disability at the other.

 

[duncan]

Fatigue is a symptom in healthy people. Symptoms are not the exclusive domain of the sick.

 

[BurnA]

I cannot see that there is problem with placing fatigue on a continuum, because that continuum also exists within ME/CFS itself.

They can place fatigue on a continuum if they like but ME/CFS has no place on that continuum. To place ME/CFS on a continuum with fatigue ignores all the other features of this illness such as PEM. It therefore suggests ME/CFS is just profound fatigue.

 

[Hip]

Symptoms are not the exclusive domain of the sick.

I can't say I have heard many people go into a restaurant and say: "my friends and I are suffering from the symptom of hunger; we wonder what gastronomic remedies you might have to treat this symptom."

 

[Hip]

To place ME/CFS on a continuum with fatigue ignores all the other features of this illness such as PEM. It therefore suggests ME/CFS is just profound fatigue.

I agree that it would be very wrong to suggest that ME/CFS is just fatigue. Not knowing the content of the presentation, though, it's hard to say what is being said.

 

[duncan]

@Hip: You never pulled an all-nighter studying for exams? Possible symptoms of this will be sleepiness, fatigue and maybe bags under your eyes. Or a symptom of being pregnant - and perfectly healthy - might larger stomachs and missed periods. The point? Symptoms can pertain to conditions of healthy people, not just diseases or disorders.

Also, clearly you have not visited some restaurants in SoHo.