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

[WillowJ]

But anorexics and bulemics will often claim a medical reason for their low weight.

Ok. But that's not an excuse for not trying to figure out whether it's from another disease but simply assuming it's from an eating disorder. I've seen a nurse sent away from my hospital room for that infraction.

 

[worldbackwards]

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.

Absolutely agree, but would I be right in thinking that White would simply deny the existence of IBS? You've got to get up pretty early to catch him out (but don't tell him you were up early, he'll just say you're depressed).

 

[WillowJ]

Absolutely agree, but would I be right in thinking that White would simply deny the existence of IBS? You've got to get up pretty early to catch him out (but don't tell him you were up early, he'll just say you're depressed).

Not sure 'deny the existance of' is the exact right way to put it, but that would be more Wessely than White.... in their own words:
http://bjp.rcpsych.org/content/185/2/95.full

(Wessely first)

For:
Our starting point was that every medical specialty has its own ‘ unexplained’ syndrome, by which we mean a diagnostic label used in that clinic to describe patients with symptoms, disability, but no clear-cut biomedical mechanism to explain their distress. Gastroenterologists see people with irritable bowel syndrome, rheumatologists see fibromyalgia, infectious disease specialists frequently diagnose post-viral fatigue syndrome, and so on and so forth.
...
Five years later, Sharpe and I stand by our thesis. We are not saying that all these syndromes are the same. We do believe that in time differences will emerge that will enable us to divide up the unexplained cake better than at present. We believe that better understanding and classification will result from an improved understanding of mechanisms. Conversely, we do not expect that improved understanding will come from further statistical manipulations of symptoms and their occurrence. The symptom-based classifications that we have now are more a reflection of professional specialisation and access to care, and do not cleave nature at the joints.

Against:
...
I conclude that the concept of a general functional somatic syndrome is unhelpful in understanding illness, aetiology, treatment and outcome, thus failing four of Kendell's tests of clinical validity (Kendell, 1989). Illnesses with unexplained physical symptoms are best considered in an integrated way, paying equal attention to body, mind and social context.

The only authors are Wessely and White. The first I is Wessely (as seen from the first citation), so the second must be White. This paper came from a debate at St. Barts, but it appears that this is White's position (not that he is reporting one of the debate sides without necessarily agreeing), as he says similar things elsewhere. (largely leaving out the part about body/bio, unless by this he means "sedentary behaviour or excessive activity", "mood disorders", and "female sex", etc., along with triggering viral infections)

The aetiology of CFS is unknown, but there is evidence that different risk markers are associated with predisposition, triggering, and maintenance of the illness. Predisposing risk markers include female sex, middle age, mood disorders (especially depressive disorders), other symptom defined syndromes, such as irritable bowel syndrome, and possibly either sedentary behaviour or excessive activity. As might be expected CFS patients are more likely to have attended their GP, than healthy matched controls, even up to 15 years before onset, but recent work shows that those with IBS (and no CFS) have the same tendency.

 

[worldbackwards]

Fair enough. I've never looked into the individual positioning too much, it all seems like so much dancing on the head of a pin. Which probably means I should be quiet.

And yes, 'deny' is wrong, in so much as neither CFS or IBS are 'denied', but instead drawn in to the FSS wonderland (wanted to type FFS there. Freudian slip).

Predisposing risk markers include female sex, middle age, mood disorders (especially depressive disorders), other symptom defined syndromes, such as irritable bowel syndrome, and possibly either sedentary behaviour or excessive activity.

You've got to give him credit there. I don't think I've ever seen so much cake simultaneously had and eaten in my entire life.

 

[Valentijn]

You've got to give him credit there. I don't think I've ever seen so much cake simultaneously had and eaten in my entire life.

Is there any other disease where the ongoing cause is supposedly due to both too much and too little of the same thing? We must be so amazingly zen

 

[Sidereal]

 

[NK17]

Maybe Ron Davis needs to have a conversation with him.

But then again how would you talk to a psychiatrist if you were a geneticist?
Which language could you use to communicate? It's science able to talk to pseudoscience?
P White is exactly like the climate change deniers and no amount of science coming from the most qualified scientist will change his mind.
Maybe Dr. Ron Davis's wife, Janet Dafoe PhD clinical psychologist, has the tools to reach inside Dr. White's mind, a mind which holds false beliefs .
While Peter White continues to shed is BS, Dr. Davis is working tirelessly with other exquisite minds and hopefully will soon find answers and interventions to save his son Whitney and the rest of us.

 

[Min]

It is all too easy for doctors who refuse to take myalgic encephalomyelitis seriously to dismiss a physical inability to chew or swallow as being psychological. Such dismissal appears responsible for this young woman's tragic death. http://www.derbytelegraph.co.uk/Tra...ndrome-tired/story-15332461-detail/story.html

The constant denigration of patients with M.E. by doctors such ss Prof White is responsible for the neglect and abuse the patients currently experience here. It is beyond my comprehension how the charities involved in the Collaborative can work with this man.i

 

[Hate ME/CFS]

I wouldn't count on our so called patient advocacy groups like the CAA/Pandora/ WPI speaking up on our behalf. They are in cahoots with the NIH/CDC/HHS in trying to kill any meaningful research for CFS/ME patients

 

[NK17]

It is all too easy for doctors who refuse to take myalgic encephalomyelitis seriously to dismiss a physical inability to chew or swallow as being psychological. Such dismissal appears responsible for this young woman's tragic death. http://www.derbytelegraph.co.uk/Tra...ndrome-tired/story-15332461-detail/story.html

The constant denigration of patients with M.E. by doctors such ss Prof White is responsible for the neglect and abuse the patients currently experience here. It is beyond my comprehension how the charities involved in the Collaborative can work with this man.i

@Min unfortunately I have to agree with you.

The way PWME are treated in the UK is not humane and should be stopped.

I don't know what some charities are thinking by accepting and supporting the views of people such as P. White.

From what I can see and what I know the only ones who are really super partes and are pushing real biomedical research forward are all the volunteers of Invest in ME and Tymes Trust.

Many others are fishy at best or holding absolutely horrid and anachronistic positions at worst. The problem is that some do it under the veil of "collaboration" and indeed you're a collaborator if you work with somebody as White.

 

[Bob]

I don't know what some charities are thinking by accepting and supporting the views of people such as P. White.
...
Many others are fishy at best or holding absolutely horrid and anachronistic positions at worst. The problem is that some do it under the veil of "collaboration" and indeed you're a collaborator if you work with somebody as White.

Personally, I don't think things are nearly as bleak as the picture you paint. I can only think of one major charity in the UK whose leadership I absolutely don't trust, and one other that's yet to earn my trust.

From what I can see and what I know the only ones who are really super partes and are pushing real biomedical research forward are all the volunteers of Invest in ME and Tymes Trust.

If we're talking about UK charities and patient organisations, I believe that ME Research UK have an excellent track record, and the ME Association are doing a fine job in many areas in my opinion.

There's also lots of local support groups and smaller fundraising groups in the UK, and a load of great charity efforts going on in the USA and Europe.

 

[NK17]

I might have exaggerated a bit @Bob, the situation in the UK regarding ME is clearly improving, but there are still too many abuses, especially on families of affected children.

In Europe there are chapters of the European ME Association (?), but in reality I don't know how much they're doing for patients.

Italy my country of origin is really lacking behind, France where I've lived in the past is almost off the radar.

It's clear that we need a major international push to get ME accepted, respected, its biomedical research funded, Centers of Excellence opened and lastly psychobabblers stripped of any decisional power.
Until then I keep my antennae up high .

 

[Min]

@Min unfortunately I have to agree with you.

The way PWME are treated in the UK is not humane and should be stopped.

I don't know what some charities are thinking by accepting and supporting the views of people such as P. White.

From what I can see and what I know the only ones who are really super partes and are pushing real biomedical research forward are all the volunteers of Invest in ME and Tymes Trust.

Many others are fishy at best or holding absolutely horrid and anachronistic positions at worst. The problem is that some do it under the veil of "collaboration" and indeed you're a collaborator if you work with somebody as White.

The 25% Group for the severely affected is the third of the national UK charities refusing to collaborate with White and Crawley.

 

[Min]

Why are psychiatrists so heavily involved in a neurological illness?

It is a nightmare situation similar to a hypothetical one in which heart disease charities happily join a collaborative with a group of gynaecologists who, insisting that heart disease is a gynaelogical disorder, take all research and treatment funding for heart disease over three decades leaving patients needlessly suffering and dying.

 

[Snow Leopard]

Is there any other disease where the ongoing cause is supposedly due to both too much and too little of the same thing? We must be so amazingly zen

Comment of the week.

 

[jimells]

Why are psychiatrists so heavily involved in a neurological illness?

Psychiatrists gotta eat, too. Only a few can make a living by charging huge fees to rich clients who spend hours per week on the shrink's couch. Talk therapy has been taken over by non-doctors with a masters degree. Shrinks have been reduced to making a living by prescribing pills, but that's being taken over by family practitioners.

Really, what do they have besides the DSM and psychobabble?

 

[maryb]

Comment of the week.

I think we should have a regular comment of the week......but that blinking valentijn would probably keep on winning it.

 

[Dolphin]

@maxwhd has alerted me to the abstract

14.40 – 15.05
Treatment options for Chronic Fatigue Syndrome
Professor Peter White

The treatment of Chronic Fatigue Syndrome (CFS) is based on the principles of physical and psychological
rehabilitation, aimed at restoring function by reversing barriers to recovery. These include maladaptive activity
patterns, such as “boom and bust”, fear avoidance, insomnia, and comorbid mood disorders.

There is systematic and meta-analytical evidence that both cognitive behaviour therapy (CBT) and graded exercise
therapy (GET) are moderately effective, cost-effective and safe, if delivered to individual patients by appropriately
qualified therapists who are adequately trained and supervised. Successful therapy is mutually negotiated rather
than imposed, and adapted by response. The NICE guidelines of 2007 support this approach, alongside medical
care and prescribed medicines for comorbid disorders such as depressive illness.

Some patient organisations have opposed CBT and GET, being concerned that efficacy has been exaggerated, and
safety concerns minimized. These concerns may influence patient choice and engagement. Abandonment of a
dualistic - mind or body - approach to management may help to address these issues.

Future research needs to include examination of mediators and moderators of therapy in order to improve
efficacy, and also address the heterogeneity of the disorder.

Professor Peter White is professor of psychological medicine at Barts and the London medical school, Queen
Mary University of London. He is a liaison psychiatrist at Bart’s and co-leads a chronic fatigue syndrome (CFS)
clinic, which also treats patients with secondary fatigue and chronic widespread pain (fibromyalgia). His research
interests have included illnesses affecting both mind and body and understanding the links between them. He has
particularly studied CFS, helping to establish its existence, particularly after infections, as well as safe and
effective treatments.

So Peter White appears to be claiming that patient organisations opposition to CBT and GET is due to mind/body dualism. There's more to it than that, Peter.

You're not going to get a long list of treatments being recommended/suggested for CFS if you have Peter White giving a talk.

 

[Dolphin]

Parallel 10 Chronic Fatigue Syndrome

Chair: Dr Billy Boland

13.50 – 14.15

Assessment and diagnosis

Dr Alastair Miller

Chronic Fatigue Syndrome (CFS) otherwise known as Myalgic Encephalomyelitis (ME) remains an enigmatic and
medically unexplained condition. There is no single diagnostic feature and in particular there is no characteristic
finding on physical examination, nor is there any consistent laboratory or imaging abnormal ity. There is therefore
no biomarker or diagnostic test.

The diagnosis therefore relies on a clear history and elimination of other potential diagnoses by examination and
laboratory tests. Although it is usually said to be a “Diagnosis of Exclusion”, in p ractice, the clinical picture of CFS
is highly conserved between individuals and is usually so characteristic as to allow a positive clinical diagnosis
rather than relying on the exclusion of other conditions.

Despite considerable controversy over different diagnostic criteria and classification for epidemiological and
research purposes, the diagnosis for clinical management is fairly straightforward. Characteristic clinical features
will be described and an approach to assessment explored in this talk

Dr Alastair Miller was a Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool
University Hospital and an Honorary Fellow at the Liverpool School of Tropical Medicine 2005 until May 2014. He
remains an Honorary Senior Lecturer at The Institute of Infection and Global Health at Liverpool University. Prior
to Liverpool he was a Consultant in the West Midlands and Honorary Senior Lecturer in Infectious Disease at
Birmingham University. His main clinical interests are blood borne viruses, bone and joint infection and chronic
fatigue syndrome/ME

 

[Dolphin]

14.15 – 14.40

Understanding the pathophysiology of chronic fatigue syndrome

Professor Julia Newton

Chronic fatigue syndrome is a common debilitating condition that affects 0.2-0.4% of the UK population. It
consists of a constellation of symptoms that constitute a recognised clinical syndrome. Despite its prevalence the
cause of chronic fatigue syndrome is as yet not fully understood. There is some evidence that individuals may
suffer abnormalities of the autonomic nervous system which predisposes to the symptoms frequently found in
chronic fatigue syndrome. There is also emerging evidence of immunological, neuroendocrine, cardiac, muscle and
brain abnormalities. This session will focus upon what is currently known about the pathophysiology of chronic
fatigue syndrome and will also highlight ongoing research that has recently identi fied abnormalities using novel MR
methodologies.

Professor Julia Newton is Dean of Clinical Medicine and Professor of Ageing & Medicine at Newcastle University
Faculty of Medical Sciences. She is also Associate Medical Director of Research at Newcastle upon Tyne Hospitals
NHS Foundation Trust. Julia heads up the Newcastle Fatigue Research Centre which brings together clinicians and
researchers interested in the symptom of fatigue across a range of chronic diseases including chronic fatigue
syndrome and ME. Her research has focused upon the role of the autonomic nervous system in the
pathophysiology of chronic fatigue syndrome and fatigue in chronic diseases and has included the use of novel MR
methodologies to define cardiac, muscle and brain abnormalities in association with this common debilitating
condition. Julia has eight PhD students, a grant income from the MRC, NIHR, EME and a range of national ME
charities including Action for ME, ME Research UK and the ME Association. To date she has published over 200 original papers.