Tweets on talks on CFS by Peter White, Julia Newton & Alastair Miller

[Tom Kindlon]

[I found the ones by Peter White the most interesting e.g. "White: only treatments that have bn successful for CFS derive from psychiatry/psychology #GAP2014."


They're in reverse chronological order i.e. newest first]


------------------------

Royal College of Psychiatrists

Faculty of General Adult Psychiatry Annual Conference ‘Reshaping Medicine’

16 - 17 October 2014

The Hilton Brighton Metropole

Final Programme


[..]


13:50-15:20 Parallel 10

Chronic Fatigue Syndrome

Chair: Billy Boland Cambridge


13:50-14:15 Assessment and diagnosis Alastair Miller Cambridge


14:15-14:40 Understanding the pathophysiology of chronic fatigue syndrome Julia Newton Cambridge


14:40-15:05 Treatment options for Chronic Fatigue Syndrome Peter White Cambridge


15:05-15:20 Questions / Discussion Cambridge

All tweets from Bethan Mair Edwards @pixiegirle


Ooops - cortisol!!! #GAP2014


White: CBT normalises cortical response in CFS. CBT is also a physical treatment - mind/body #GAP2014


White: advice: do not pace- CBT more effective for CFS. .....i disagree! #GAP2014


White: 40% ppl who attend CFS clinic do not have CFS #GAP2014


I get so tired that i cant go out to buy food or make it, therefore i dont eat! #GAP2014


White: states that all ppl with CFS can feed themselves. If they loose weight they have an eating disorder..... Yeah right!!! #GAP2014


White: only treatments that have bn successful for CFS derive from psychiatry/psychology #GAP2014


White: puts case forwards for psychiatry in the treatment of CFS #GAP2014


Newton: physiological aetiology & implications of CFS being emphasised. #GAP2014


Newton: discusses ateology of CFS #GAP2014


Newton: asks is the condition real? Says that ppl hav genetic predisposition to developing CFS #GAP2014


Newton: pts lives torn apart by this condition. Suffer anxiety & depression as secondary reactive consequences #GAP2014


Newton: talks about research at newcastle uni re fatigue in chronic conditions & how research in2 these can help treatment of CFS #GAP2014


Newton: CFS enormous cost to pts, employers & healthcare ststem #GAP2014


Newton: fatigue & tiredness different things. Hard to make diagnosis as no objective criteria #GAP2014


Julia Newton next: the pathology of CFS #GAP2014


Member of the audience asks why ppl with CFS do not have a lumbar puncture to confirm viral infection #GAP2014


'Strict' sorry! #GAP2014


Miller: the struct definition if CFS remains controversial.

Definutions mainly fir research not clinical practice #GAP2014


Miller: positive test for EBV - useless as indicator of CFS as majority of ppl in their 30s + test positive for this #GAP2014


Miller: importance to distinguish solomence / sleepiness from CFS #GAP2014


Hmm & whys this? Who accompanies males in their 30s-40s? Their partners probably!! #GAP2014


Miller: pts usually attend clinic with long history / list of symptoms. Women in 30s-40s often atten with their mothers.....#GAP2014


Miller: CFS often associated with viral infection& adverse life events #GAP2014


Miller: no curriculum that specifically trains Clinicians who work with CFS #GAP2014


Miller: number of definitions if CFS since the 80s, the oxford, canadian & international criteria. Day to day fukida criteria used

#GAP2014


Miller: big problem in how CFS is defined. Some Pt groups have v fixed views on this ie CFS not the same as ME #GAP2014


Miller: great problem with ppl equating chronic fatigue with chronic fatigue syndrome #GAP2014


Miller: 10% of GPs see ppl presenting with fatigue #GAP2014


Next Session: Chronic Fatigue Syndrome #GAP2014

 

[duncan]

It's like eavesdropping on a clandestine conversation about a new story line between J.R.R. Tolkien and C.S. Lewis and Robert E. Howard - with a comparable amount of fantasy.

I am particularly drawn to the reference attributed to Miller that CFS is often associated with viral infections and adverse life events. Everyone, pretty much I should imagine, has had viral infections and adverse life events. Everyone.

 

[Sidereal]

Disturbing comments by White, as usual, particularly the bit about everyone with CFS being able to feed themselves and that if they don't eat they have an eating disorder. I know from personal experience that he's wrong.

 

[catly]

Maybe Ron Davis needs to have a conversation with him.

 

[Snowdrop]

It really is very NICE of P White to constantly provide us with his perspective on this illness. As his thinking is 'out there' for everyone to view in perpetuity.

I guess that he has no qualms about how his opinions will be viewed in the long term.

 

[biophile]

White: CBT normalises cortical response in CFS. CBT is also a physical treatment - mind/body #GAP2014

Why do I get the feeling this is based on an uncontrolled study which fails to account for natural course?

[edit: It is! Thanks to A.B. for pointing out the relevant thread: http://forums.phoenixrising.me/inde...pilot-study-on-the-comparison-with-hea.32563/ ]

White: advice: do not pace- CBT more effective for CFS. .....i disagree! #GAP2014

APT is not the same pacing as done by many other patients.

White: states that all ppl with CFS can feed themselves. If they loose weight they have an eating disorder..... Yeah right!!! #GAP2014

Nonsense. Patients may be too ill to cook or eat properly. Patients may have nausea, digestion issues, or reduced appetite. Treatments may also have side-effects which adversely affect eating. e.g. Tramadol.

White: only treatments that have bn successful for CFS derive from psychiatry/psychology #GAP2014

These treatments have an unfair advantage, as treatments from other fields of medicine are expected to demonstrate efficacy in placebo-controlled trials, but CBT/GET for CFS gets a free pass. Nonblinded trials into a range of quackery are probably just as effective as CBT/GET for CFS.

Newton: pts lives torn apart by this condition. Suffer anxiety & depression as secondary reactive consequences #GAP2014

Newton: talks about research at newcastle uni re fatigue in chronic conditions & how research in2 these can help treatment of CFS #GAP2014

Newton: CFS enormous cost to pts, employers & healthcare ststem #GAP2014

Yet research funding for CFS is chump change.

Miller: the struct definition if CFS remains controversial.

Definutions mainly fir research not clinical practice #GAP2014

And we wonder why almost half of patients in the clinic don't have CFS?

Miller: big problem in how CFS is defined. Some Pt groups have v fixed views on this ie CFS not the same as ME #GAP2014

Miller: great problem with ppl equating chronic fatigue with chronic fatigue syndrome #GAP2014

CFS probably isn't the same as ME if 'CFS' means chronic fatigue e.g. Oxford criteria.

Plenty of researchers seem to have their own fixed views.

 

[Valentijn]

Peter White is going to look like such an idiot once we have proof of biological pathology.

Oh wait, we already do! I guess he can't understand the two-day CPET research, nor comprehend the rather different CPET and blood results obtained from controls who actually are deconditioned, versus ME patients.

How long til he's shouting this on a street corner instead of getting yawned at in lecture halls?

 

[Cheshire]

I get so tired that i cant go out to buy food or make it, therefore i dont eat! #GAP2014

I don't understand. What is this supposed to be humor, cynism?

 

[A.B.]

Why do I get the feeling this is based on an uncontrolled study which fails to account for natural course?

I believe the relevant study has already been discussed: http://forums.phoenixrising.me/inde...pilot-study-on-the-comparison-with-hea.32563/

Great post by the way.

 

[jimells]

I don't understand. What is this supposed to be humor, cynism?

No, just the poster's daily experience. Currently I am only able to get to the grocery about twice a month because I don't have the energy to drive 20 miles round trip. And to think I used to drive 500 miles a day, five or six days a week!

 

[Cheshire]

No, just the poster's daily experience. Currently I am only able to get to the grocery about twice a month because I don't have the energy to drive 20 miles round trip. And to think I used to drive 500 miles a day, five or six days a week!

Ok, thanks! I thought it was Peter White talking, and making fun of us.

 

[Valentijn]

I don't understand. What is this supposed to be humor, cynism?

It was the personal comment from the twitter user who was also posting Peter White's comments so that the rest of us could point and laugh.

 

[user9876]

Disturbing comments by White, as usual, particularly the bit about everyone with CFS being able to feed themselves and that if they don't eat they have an eating disorder. I know from personal experience that he's wrong.

The problem is he hasn't bothered to listen to his patients and understand what CFS is and he is just equating it with feeling tired. Hence he doesn't appreciate issues such as nausea, loss of appetite as well as the issues of getting support to get meals when severely affected.

When he claims psychological treatments are the only ones to have success we should remember that he had to change practically every element of the PACE protocol to get results that were still way below what he predicted. Including changing the definition of recovered to be below the trial entry criteria and suppressing the results as defined in the protocol. So does he really believe what he is saying he must know his results are rubbish and don't support his theories.

 

[A.B.]

Is there more information about Dr Newton's point of view?

Is there a video of the event available?

 

[Snow Leopard]

White: 40% ppl who attend CFS clinic do not have CFS #GAP2014

A particularly interesting claim right there...

I am particularly drawn to the reference attributed to Miller that CFS is often associated with viral infections and adverse life events. Everyone, pretty much I should imagine, has had viral infections and adverse life events. Everyone.

It's funny how we sometimes mistake the trees for the forest.

 

[WillowJ]

It's weird how a supposedly qualified psychiatrist does not know that the the necessary prerequisite for diagnosis of eating disorders is a deliberate change in eating habits specifically due to body dismorphia (fixation on appearance, usually with a distorted view of self-appearance). You cannot have an eating disorder without fixation on strictly controlling body shape or size, and this must be the cause of change in eating habits.

(I read up on this because I get accused of having one, solely due to being underweight, from time to time.)

Saying you are too sick, too exhausted, too nauseated, too weak, or just don't feel hungry is not an eating disorder.

Suggesting otherwise is a massive fail, and risks missing potentially hugely important medical pathology. This is dangerous.

 

[Esther12]

re trouble feeding oneself: he seems to take no account of the real poverty a lot of patients find themselves in. That, along with difficulty shopping and cooking, can make it a lot more difficult to eat properly because the sort of convenient foods that do not take a lot of energy to prepare are often more expensive too. I had a period of being really broke, and it did mean that I ended up eating less than I should... that's not an eating disorder!

 

[Dolphin]

Peter White/St Bartholomew's Hospital Chronic Fatigue Services comments on the draft NICE guidelines

(iii) On Weight loss in CFS/ME

SH St Bartholomew's Hospital Chronic Fatigue Services
88 FULL 248 6.5.5.2

"Adults or children who experience
severe weight loss should be referred
to a dietitian for assessment, advice
and nutritional support, which in
extreme cases may include tube
feeding."
This is alarming and arguably negligent
advice, which we strongly condemn.
Any patient who experiences severe
weight loss should be referred for
appropriate assessment, not by a
dietician alone, but by an appropriate
specialist doctor (gastro-enterologist or
psychiatrist) so a diagnosis can be
made. We do not know of any reliable
or replicated evidence that severe
weight loss, in deed any weight loss at
all, is a part of CFS/ME. Whereas we
are aware of patients referred to our
service with a diagnostic label of
CFS/ME who on assessment have an
alternative diagnosis, most commonly
anorexia nervosa (sometimes
presenting atypically without a body
image disorder, which is well described
in the anorexia nervosa literature), but,
on occasion, malabsorption.

NICE
This recommendation has been
removed.

One can find more of such quotes in the link in my signature.

 

[Valentijn]

Saying you are too sick, too exhausted, too nauseated, too weak, or just don't feel hungry is not an eating disorder.

Generally I agree ... if someone has an illness, that's far more likely to be the cause. And Peter White needs some intensive psychotherapy himself, regarding his various delusions about ME/CFS.

But anorexics and bulemics will often claim a medical reason for their low weight. A girl in my dorm at uni did that (hogging the one working toilet on our floor in the process ), and when I called them I was told by uni Health Services that they wouldn't get involved unless she approached them. Her medical claim was rather bizarre, involving a supposed car accident, but she admitted she had a problem and thanked me after I printed out a "how to get help" brochure and a brief personal letter and slid it under her door.

 

[WillowJ]

Peter White/St Bartholomew's Hospital Chronic Fatigue Services comments on the draft NICE guidelines


One can find more of such quotes in the link in my signature.

why would they just remove the comment, I wonder? I would edit to "dietitian or gastroenterologist". There is nothing that says a patient with a CFS diagnosis cannot have celiac disease, Crohns, etc. And dietitian is perfectly well qualified to diagnose and treat eating disorders, in case that's present. (edit: not that it's bad to have a psychiatrist do this, but it's unnecessary to complain that there is no one to diagnose/treat eating disorder, on the original list)

However it is 100% untrue that persons with CFS do not lose weight or experience malabsorption, though this might be due to comorbid IBS (yes, you can have that from "IBS"). Maybe this is not in the research, but that is only because no one thought to ask.

Edit: of course the GI problems or "IBS" could be from the ME itself