Peter White/Barts - comments on draft NICE guidelines - insight into their views

[Angela Kennedy]

I think I well understand. Look at my posts ! - I've made perfectly clear - as to understand can I give you my "run-in" with Psychos - at least 4 pages. And just to add I'm a Hooper/Williams/Hyde/Canadian Consensus/de Meileir/Whittemore/Iime person through experence. We all know what the problem is here so you are not speaking to idiots ! Did you read my "why oh why do the Psychos still believe ME falls into their field" - perhaps not. Perhaps a little too subtle on Gabapentin - they should engage with real doctors for answers. But cheering up (after my 11 years) with so much efforts going on for the real thing by many (too few yet) we are on the way. Big smile and less heat - most certainly between members in this marvellous PR forum.

But you have been writing as if you DON'T understand this- conflating CRITICS of psychogenic explanations with PROPONENTS of psychogenic explanations. This is important, because of the way some of you are trying to trivialise and attack the fact that people on these forums are engaging in important critical analysis of a whole edifice (psychogenic explanations and related psychobabble), that won't go away just because you or others advocate putting the community's fingers in their ears and singing 'lalala' as the only way to deal with it!

 

[Angela Kennedy]

You must have the wrong person. With my history it sometimes "amuses" to read what they up to - changing goal posts etc. If you read any of my past posts you will have noted (sometimes with anger) at the history here (and elswhere) of Psycos claiming ME their field. I have 4 specialist doctors in my family who know otherwise. As far as I'm concerned I'm in total agreement with Margaret Williams. Check your facts! And now I will get on enjoying this lovely PR forum.

I've checked my facts plenty thank you. You make the same points over and over again. In fact, by your logic, Margaret Williams' analysis of the words of the psychiatrists is itself engaging with the psychiatrists and to be stopped immediately!

Check your logic, please. Because it matters that you understand what you are advocating, and its potentially catastrophic implications for this community (ignorance is best. Treat psychogenic explanation proponents like naughty children and ignore them, and they'll go away).

 

[Angela Kennedy]

Not prepared to discuss further - there are people (in various capacities) fighting for the rights of REAL ME. (ie not Psycho).

Including me dear, by critiquing psychogenic explanations for ME, rather like Margaret Williams does! I think you might be understanding me now...

I'm posting this comment by biophile from another thread, who makes some extremely salient points (thank you biophile), in the hope that the issues will become clearer if they haven't already:

"...I don't think analyses of psychosomatic explanations of CFS have been done to death. Psychobabble shouldn't get an easy ride, and authors should be called on it if it is present in their studies. The scientific community in general, and AFAIK the large patient organisations as well, have all failed to do this properly.

Yes, we do need much more funding into biomedical research as a priority, and yes proven organic pathology will help loosen the grip of psychobabble, but frankly, these alone won't make it stop. There is a long history of psychologisation of illness in general, and mind over body psychobabble for known organic diseases still continues today. Don't underestimate the tradition, inertia, and entrenchment of such psycho>somatic ideologies.

Biomedical research funding could be mostly wasted if the issues with criteria are not resolved. Even then, at some stage someone will want to repeat the psychological research after ME/CFS has become better defined and understood. Also, biological abnormalities are more exposed to psychobabble if they are on the frontiers of science and more subtle than previously established disease processes.

Expect to see redefining of terms, goalpost shifting, and an irrational "escalation of commitment". People have compared this to a war. Pushing for biomedical research while ignoring the psychobabble would be like a superior army heading into battle with a vulnerable flank, the fighting will last longer and the victory will cost more casualties. As Tom Kindlon said on the comments page of Mindy Kitei's article, some psychological research is interesting and helpful. It can also be used to help combat flawed psychobabble.

Many patients and advocates have written critiques of particular psychological studies and hypotheses over the years, not to mention other research areas such as the flawed XMRV/MLV studies (eg Gerwyn). I would actually like to see an increase in this sort of activity, but unfortunately much of what has been written is embedded and scattered across countless pages of forum discussions and blogs etc. If only this wealth of information and wisdom was more centralised, involved collaboration among multiple authors, and was better targeted towards those who need to see it? "

 

[Angela Kennedy]

Who do you think you are. Well now on my Button - Ignore list. And it seems quite unaware people around here are limited, unwell and giving freely of their time to aid others whilst posting real help for those trying to get better along with latest research findings. End of story.

I'm sorry Enid, but you have got the wrong end of the stick. Ignore me if you like, but YOUR level of entrenched ignorance has caused a lot of problems here, especially for me.

 

[Angela Kennedy]

And I could have you up for misrepresentation. I've just the Google history.

Look, i don't want to play some silly game of tit-for-tat with you. I've actually tried initially to gently get you to understand that you might have the wrong end of the stick here. That didn't work, sadly. I'm shocked at your level of petulance and entrenched determination to misunderstanding. I know people disagree on these forums, and often it doesn't matter too much: but your inability to understand the issues here is, especially as shared by others, a potential disaster for the whole community, and is causing terrible trouble for me and the work I've been doing for ME/CFS advocacy for years. I don't want to be arguing the toss here- but I have no other option it would seem (apart from letting you and others carry on regardless in your determined ignorance, which is just not feasible, sadly.)

But good grief! 'Have me up for misrepesentation'. What on earth are you talking about?

 

[Enid]

You must be thick - you are already talking to converted here - everyone who has ME KNOWS the insidious hold the Psychos have in this illness. Against that we all fight. But you are not willing to understand that or apparently cannot see. This is my last post here - I am tired of your misrepresentation and insulting behaviour and inability to see the obvious.

 

[Angela Kennedy]

You must be thick - you are already talking to converted here - everyone who has ME KNOWS the insidious hold the Psychos have in this illness. Against that we all fight. But you are not willing to understand that or apparently cannot see. This is my last post here - I am tired of your misrepresentation and insulting behaviour and inability to see the obvious.

Why have you deleted some of your posts here, Enid?

 

[Dolphin]

Peter White presentation in Sweden 2009

Peter White presentation in Sweden 2009

http://www.sou.gov.se/socialaradet/omarbetet/konferenser.htm
http://www.sou.gov.se/socialarad/pdf/Peter Whites presentation.pdf

What helps occupational rehabilitation when the doctor cannot explain the symptoms?

Peter White

Agenda

Symptom defined illnesses (SDIs)

The example of chronic fatigue syndrome

Biopsychosocial management is best

Prevention is even better

Symptom defined illnesses

Tension headaches,

Atypical facial and chest pains

Fibromyalgia (chronic widespread pain)

Other chronic pain disorders

Irritable bowel syndrome

Multiple chemical sensitivity

Chronic (postviral) fatigue syndrome (ME)

How common is CFS?
0.2 - 2.6 % population or primary care
Risk (OR) of depressive illness with
chronic physical disorders
CFS 7.2
Fibromyalgia 3.4
Peptic ulcers 2.8
COPD 2.7
Migraine 2.6
Back pain 2.3
Cancer 2.3
MS 2.3

UK costs of CFS

118,000 on incapacity benefit

19,000 on disability living allowance

+ Cost of medical and social care

+ Loss of employment

Outcome is poor without treatment

Systematic review of longitudinal studies
5 % (range 0 - 31) recovered by follow up
39 % (range 8 - 63) some improvement
Cairns R, Hotopf M, Occup Med 2005

Use the biopsychosocial model

The biopsychosocial model "takes into account the patient, the social content in which he lives and ... the physician role and the health care system."

George Engel, 1977

Management is biopsychosocial

Biological
e.g. medication, physical rehabilitation

Psychological
e.g. CBT

Social

Remove the barriers to recovery -

Relationships .. at work or home

Iatrogenic .. bad healthcare advice

Benefit gap .. financial incentives

The lost art of rehabilitation

We have forgotten not only how to rehabilitate patients, but that we need to do so for the patient to make a full recovery.

Graded exercise therapy for CFS

Exercise = "an activity requiring physical effort"

Percentage improved with GET

Percentage improved with CBT

But do these treatments help patients return to work?

"Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work."

- Even without occupation as the aim.

Systematic review: SD Ross et al, Arch Intern
Med 2004

Predictions of non-response to GET

High psychological distress

Membership of a self-help group

Sickness benefit

R Bentall et al, 2002

Social risks
"If you have to prove you are ill, you can't get well." (N Hadler, 1996)

"ME is an incurable disease." (UK doctor, 2008)

Does the BPS approach work?

CFS
Low back pain
IBS
Depressive illness
(Cardiac disease)
(DM)

Preventing SDIs

Patients with infectious mononucleosis

Brief rehabilitation, with graded return to
activities

Compared to leaflet

By 6 months, 26% had abnormal fatigue after rehab, compared to 50% of controls.
B Candy et al, 2004

 

[oceanblue]

Peter White presentation in Sweden 2009

Thanks, that's fascinating

Robust estimate of minimum UK prevalence?

UK costs of CFS

118,000 on incapacity benefit

19,000 on disability living allowance

+ Cost of medical and social care

+ Loss of employment

Interesting. I didn't think the DWP had ever released info the numbert of IB cases of CFS. It certainly puts a floor on the number of CFS cases of 0.3%:

The working-age population - 16 to 64 for men and 16 to 59 for women - rose by 304,000 to 37.4 million between 2004 and 2005. (Guardian)

IB requires minimum recent National Insurance contributions so some working age adults eg school leavers, those who have been unemployed for a while and those not working, but not "officially" unemployed will not be eligible for IB. These "inactive" people of working age include people who stay at home, students without a part-time job and those who retire early. Excluding these people from the working age population would give a higher prevalence rate for CFS.

ETA: It looks like 20% of the working age population is not unemployted but is economically inactive, and only 28% of these are sick or disabled (see page 35 of this report). This would give an adjusted working age population (excluding the economically inactive who wouldn't qualify for IB if they got ill) of roughly 32 million and a rate of 0.37% of the relevant population on IB because of CFS. Coincidentally, this is the same as the the CMO's Working Group Report on CFS that estimated prevalence of 0.4% (did they have access to similar data?).

These figures will exclude anyone who has CFS but is able to continue working, even in a part-time capacity.

The biggest weakness with these figures is that the CFS is presumably self-reported by claimants. On the other hand, getting IB has always ben hard with CFS so it's likely that the vast majority of these cases have a medical diagnosis to back up their claims.

There again, the true rate is 0% according to Rod Liddle.

Biopsychosocial management is best...

The biopsychosocial model "takes into account the patient, the social content in which he lives and ... the physician role and the health care system." - George Engel, 1977

...Social risks
"If you have to prove you are ill, you can't get well." (N Hadler, 1996)

Management is biopsychosocial

Biological
e.g. medication, physical rehabilitation

Psychological
e.g. CBT

I think that's the first time I've noticed Peter White explicitly use the word biopsychosocial. And interesting to learn that GET is a biological approach.

Patients with infectious mononucleosis

Brief rehabilitation, with graded return to
activities

Compared to leaflet

By 6 months, 26% had abnormal fatigue after rehab, compared to 50% of controls.
B Candy et al, 2004

B Candy et al, 2004
Conclusions: A brief intervention at the diagnosis of infectious mononucleosis is acceptable, and may help prevent the development of chronic fatigue. Definitive randomised controlled trials are required to test the intervention.

 

[Dolphin]

Thanks for analysis, oceanblue.

These were the first time I had seen IB figures, although had seen DLA figures before. However, I'm not in the UK so not as focused as others might be:

118,000 on incapacity benefit

19,000 on disability living allowance

This seems to me to be a very big gap, especially when one considers that there are economically inactive people who could also qualify for DLA. So it makes me a bit suspicious of the 118,000 figure.

 

[oceanblue]

Thanks for analysis, oceanblue.

These were the first time I had seen IB figures, although had seen DLA figures before. However, I'm not in the UK so not as focused as others might be:

This seems to me to be a very big gap, especially when one considers that there are economically inactive people who could also qualify for DLA. So it makes me a bit suspicious of the 118,000 figure.

Interesting point. DLA has a much higher threshold than IB used to have so I don't think the figures are incompatible, though it is a big gap. I was once assessed for DLA when bedbound and the examining doctor concluded there was nothing wrong with me on the basis of my firm handshake. And I didn't even know I was eligible for DLA for the first 3 years of my illness.

 

[Dolphin]

If one looks at this survey by the Shropshire ME group, 54 people are getting DLA but only 28 are getting ICB: http://www.shropshiremegroup.org.uk/docs/2010stats.doc .

For 2009, a bit of a difference (perhaps more accurate as ESA may be messing things up): IB 45, DLA 54: http://www.shropshiremegroup.org.uk/docs/2009stats.doc .

 

[Marco]

What helps occupational rehabilitation when the doctor cannot explain the symptoms?

Peter White

Agenda

Symptom defined illnesses (SDIs)

Risk (OR) of depressive illness with
chronic physical disorders
CFS 7.2

This is essentially the core of the biopsychosocial model of ME/CFS. No physical abnormalities are found (the doctor cannot explain the symptoms), there is (by some accounts) high co-morbidity of depression, ergo self reported symptoms have no physical basis and arise as a consequence of mental distress.

A classic case of a psychosomatic illness.

Except 'psychosomatic' as used today is a corruption of the initial intent of those psychiatrists that first described the phenomenon.

This paper is from the journal Biopsychosocial Medicine :


Symptoms of somatization as a rapid screening tool for mitochondrial dysfunction in depression

Multiple medically-unexplained somatic complaints, usually associated with mood symptoms, is currently designated as "somatization" under the Diagnostic and Statistical Manual (DSM) system used to classify mental illness.

The French physician Briquet, in his 1859 treatise on hysteria, described mood as well as a long list of somatic symptoms among his 430 patients, including migraine, abdominal pain, muscle pain, palpitations, restlessness, hyperesthesias, anesthesias and fatigue [1]. While Briquet assumed that his patients' symptomatology had a biological basis, many mental health providers today practice under the assumption that prominent somatic symptomology among depressed individuals are of psychic origin, a theory often attributed to the work of Sigmund Freud.

The popular concept of the symbolic conversion of psychic conflicts into somatic symptoms by the unconscious mind was presented by Freud and Breuer in order to explain the specific somatic manifestations reported, not necessarily their initial pathogenesis.


Somatic symptomatology is common in depression, and is often attributed to the Freudian-inspired concept of "somatization". While the same somatic symptoms and depression are common in mitochondrial disease, in cases with concurrent mood symptoms the diagnosis of a mitochondrial disorder and related therapy are typically delayed for many years.

A short screening tool that can identify patients with depression at high risk for having underlying mitochondrial dysfunction is presented

Far from a multitude of vague and varying symptoms being highly suggestive of a psychosomatic disorder as is often stated as an accepted fact in some quarters, somatic symptoms occurring in conjunction with depression is actually highly suggestive of a mitochondrial disorder.

The authors suggest that a small subset of questions from the Karolinska Scales of Personality questionnaire can be used to effectively distinguish those patients whose depression, as well as somatic symptoms, are likely to have arisen from a mitochondrial disorder.

Six items of the Karolinska Scales of Personality (KSP) were found to differentiate among 21 chronically-depressed Swedish subjects with low versus normal muscle ATP production rates. A screening tool consisting of the six KSP questions was validated in the relatives of American genetics clinic patients, including in 24 matrilineal relatives in families with maternally inherited mitochondrial disease and in 30 control relatives.

Here are the six KSP questions used as the screening tool :

My heart sometimes beats hard or irregularly for no real reason.

I often have aches in my shoulders and in the back of my neck.

My body often feels stiff and tense.

I think I must economize my energy

In order to get something done I have to spend more energy than most others.

I feel easily pressured when I am urged to speed up.

The KSP has four possible choices for each item: "Applies Completely" (score 4), "Applies Rather Well" (score 3), "Does Not Apply Well" (score 2) and "Does Not Apply at All" (score 1). Since some degree of somatic symptoms are nearly universal, yet in our experience are highly exaggerated in patients with mitochondrial disorders, we evaluated the items based upon the maximum score of 4 ("Applies Completely") versus all other scores.

If you have co-morbid depression and score two or more of these items as Applies Completely the authors suggest that you are likely to have a mitochondrial disorder.

We propose that energy depletion constitutes at least part of the inherited biological predisposition towards the development of depression with somatization predicted by Freud. Furthermore, although our present findings require additional validation in varied groups of patients, our preliminary data suggest that a small number of specific somatic-related questions, inquiring for symptoms that likely would be instantly recognizable by Briquet and Freud, can be constructed into a valid screening instrument for cases at high risk for having a component of energy metabolism in their pathogenesis, or "mitosomatic" illness.

http://www.bpsmedicine.com/content/2/1/7


Perhaps Peter White doesn't subscribe to 'Biopsychosocial Medicine'?

 

[oceanblue]

If one looks at this survey by the Shropshire ME group, 54 people are getting DLA but only 28 are getting ICB: http://www.shropshiremegroup.org.uk/docs/2010stats.doc .

For 2009, a bit of a difference (perhaps more accurate as ESA may be messing things up): IB 45, DLA 54: http://www.shropshiremegroup.org.uk/docs/2009stats.doc .

Thanks. It's interesting, but those samples are small and group membership may not be representative of the wider patient population (I suspect the vast majority are not in local groups, but maybe you have figures).

There again:

Looking at total data, there were about 3 million DLA claimants in 2008 compared with maye 2.8 million on IB in 2008. So even if people with CFS find it relatively harder to get DLA (which I suspect is the case), that wouldn't really explain the IB figure being 6x higher than the DLA figure. Do you know if Peter White quoted a source for his figures?

 

[Dolphin]

Thanks. It's interesting, but those samples are small and group membership may not be representative of the wider patient population (I suspect the vast majority are not in local groups, but maybe you have figures).

There again:

Looking at total data, there were about 3 million DLA claimants in 2008 compared with maye 2.8 million on IB in 2008. So even if people with CFS find it relatively harder to get DLA (which I suspect is the case), that wouldn't really explain the IB figure being 6x higher than the DLA figure. Do you know if Peter White quoted a source for his figures?

I don't know if Peter White quoted a source.

I agree members of local groups (or patient groups in general) may not be representative - for example, probably have the illness longer, older, more severely affected, etc.
Also, only a fraction of people with the illness (by whatever estimate) are members of local or national organisations. I remember trying to make some extrapolation from the Shropshire figures - can't remember what I estimated! Think maybe 20,000.

However, 118,000 seems a very big figure e.g. if look at Nacul et al., 2011 data.
If it was an official figure, it would be useful to show the scale of the problem because, as you point out, there are various types of people e.g. those working, those ineligible, etc. who can't qualify.

 

[oceanblue]

I don't know if Peter White quoted a source.

I agree members of local groups (or patient groups in general) may not be representative - for example, probably have the illness longer, older, more severely affected, etc.
Also, only a fraction of people with the illness (by whatever estimate) are members of local or national organisations. I remember trying to make some extrapolation from the Shropshire figures - can't remember what I estimated! Think maybe 20,000.

However, 118,000 seems a very big figure e.g. if look at Nacul et al., 2011 data.
If it was an official figure, it would be useful to show the scale of the problem because, as you point out, there are various types of people e.g. those working, those ineligible, etc. who can't qualify.

Thanks for all this info, it's been very informative.

It would have been a really useful figure, but I fear that, perhaps not for the first time, PDW presented data that doesn't seem to quite stack up.

 

[Dolphin]

Symptoms of somatization as a rapid screening tool for mitochondrial dysfunction in depression

Great find, Marco. And nice summary. And the biopsychosocial angle is interesting also.

If you haven't already done so, it might be worth giving it its own thread to both highlight it and have a good discussion.

 

[currer]

Thanks for finding these figures on IB and DLA.

When asked, the DOH has always refused to release the figures for people claiming benefit for this illness, saying they do not keep the statistics, which I always thought odd - they only have to count the claimant figures, which are kept by the DWP, and then think a bit.
I am sure the DWP will tell the DOH the figures, if they ask nicely.

I expect these figures are well known to the research institutes which study psychosocial medicine - eg the one at Cardiff University http://www.whywaitforever.com/dwpatosbusinessunum.html

The benefits referred to here have been "reformed" away, but these figures tell us a lot.
DLA is much harder to get than IB. IB could only be claimed if you have worked and paid stamps for two years prior to claiming, otherwise you get the disability supplement of Income support.

Most ME sufferers of working age with a work background will get IB. So we can start with 118 000. The sickest of them will also get DLA. But DLA is a very difficult benefit to prove you qualify for, so only the sickest are likely to persist in their claim.

Children who become ill at school, or young people who become ill at university, (a common time to develop ME) will not qualify for IB, but if VERY ill may get DLA.
So 118 000 is an underestimate.

Married women may not qualify for IB nor the retired sufferer.

Many people with ME continue to work and do not show up on any of these figures.
Many people with ME who do not work will be getting income support, as they will not qualify for incapacity benefit.

So maybe 250, 000 sufferers in the UK is about right?

If so, you realise why the DWP is so anxious to deny our illness, as this is a massive sickness burden in a working age population, and shows how costly ME probably is.

Instead of agonising about the numbers claiming benefit, and trying to make it impossible for disabled people with chronic disease to claim benefits, our government should research the reasons why chronic conditions are increasing in the population - MS, lupus, ME.

This is why I am so interested in the retroviral hypothesis, as there has to be some reason for these acquired conditions in previously healthy young people.
The link above provides a quote to say that the rise in incapacity among the working age population has taken place "since the 1980s", and we know there was a huge rise in the numbers affected by ME in that decade.

"21. It is known paradox that despite the vast advances in medical treatments in the later half of the 20th century that there is a huge increase in people who are considered too ill to work. This rise in incapacity has taken place from the 1980s onwards and is seen in all developed countries. It cannot be easily explained in medical terms. Clearly the increase in illness is a complex social and psychological problem and definitely not imaginary. The biopsychosocial model of disability not only explains this part of this phenomenon, but also suggest how best to manage it"

". The incidence of ME/CFS is rising alarmingly. In order of insurance costs, one of the major medical insurance companies (UNUM Provident) reported in 1993 that ME/CFS came second in the list of the five most expensive chronic conditions, being three places above AIDS. In August 2004 the same company issued a Press Release reporting a 4,000% (four thousand) increase in claims for symptom-based syndromes, including ME/CFS. No other disease category surpassed these rates of increase. UNUM's "CFS Management Plan" states: "UNUM stands to lose millions if we do not move quickly to address this increasing problem". The latest estimate (January 2007) of the economic impact of ME/CFS in the US is between $22-$28.6 billion annually; in Japan it is $10 billion annually."

 

[oceanblue]

Hi currer,

I agree with a lot of what you say but the huge difference between DLA and IB is still odd, given that in total there are more DLA claimants than IB ones, which tallies with the figures Dolphin gave for local groups. As I said in one of my posts, I can understand IB CFS claims being substantially higher than DLA CFS claims, but the 6x higher figure does make me suspicious: I think either the DLA or the IB figures cited by Peter White is probably unreliable.

 

[currer]

You could be right, ocean, it doesnt make much sense to me - except you must remember that DLA is claimed by those WHO WORK WITH A DISABILITY - eg those who are wheelchair bound but otherwise fit.

Not all DLA claimants are sick, as PWME are sick. If you are born with a disability that impairs your mobility and adds to your living costs you can claim DLA. You may be quite fit, medically apart from lacking a leg!

Many DLA claimants work full time, and are quite well enough to do so. They claim DLA because of EXTRA costs consequent on living with a disability. This is what DLA was created to compensate for.

So many disabled people, not only those with sicknesss, claim DLA.

It is useful to remember the distinction between the fit and unfit disabled. PWME are SICK and disabled in consequence, but many disabled are in fact fit, but physically impaired!

So Peter White's figures could well be accurate.

In fact our government no longer wishes to pay the costs associated with disability and is introducing "reform" to reduce the number of benefits available to compensate the disabled for the disadvantages of their disability.

"We are all in this together" as our prime minister says, unless you are a financier.