Private Eye - ME Cluster Bomb

[Jo Best]

Whether they happen to class ME as 'physical' or 'psychological' doesn't alter the main problem of patients being misled about the treatments available to them.

Also, the bio-psycho-social protagonists have moved on from the physical v psychological chestnut to a position of a model whereby not only does mental health (including childhood abuse) and lifestyle (bad sleep habits) affect biology, but that psycho-behavioural therapies can treat the biological abnormalities, e.g. as Esther Crawley was quoted in the recent media coverage of FITNET -

“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.” The Times, 2nd November 2016.

This has been evolving for some time in UK, e.g. very bare bones -
First, we had the dispute over whether ME was organic at all - the argument that it was psychosomatic and that outbreaks were cases of mass hysteria (e.g. McEvedy and Beard on the London Royal Free Outbreak).
Then we had the Oxford criteria version of what had been defined in USA as CFS.
Patients/advocates objected to CFS replacing ME so a compromise was reached by some to call it CFS/ME (Esther Crawley is on record as saying this in a media interview).
WHO added the term CFS to the alphabetical index of ICD-10 with a reference to G93.3 - same category of organic neurological disorder as (benign) myalgic encephalomyelitis and post-viral fatige syndrome.
However, CFS/ME became known in the medical profession as psychosomatic or somatoform, and specialist care was provided under mental health (see most if not all the specialist clinics, including paediatric).
After years of patients and advocates fighting for recognition of ME (or CFS if so diagnosed) as the physical/organic neurological disorder classified by WHO (and with increasing evidence from biomedical studies) we start to hear CFS/ME described as neurological and we hear of links between immune system dysfunction and psychiatric disorders. Professor Peter White writes an article in the BMJ called, 'Time to end the distinction between mental and neurological illness' (http://www.bmj.com/content/344/bmj.e3454/rr/593787).
Now we see ME/CFS stated as neurological by MEGA in their petition to mainstream research funders, ditto the flyers for FITNET, accompanied by claims that CBT delivered over the internet affects biology.
So I've no personal or even professional dislike of Phil Hammond, and I hope that he is beginning to see the light or does so soon (perhaps if @Jonathan Edwards does write a letter in response to the article he could suggest that Phil Hammond attends the 2017 Invest in ME Conference) but the content of his article is entirely consistent with the bio-psycho-social illness model although I agree that it's fine on the face of it and I wouldn't bother to comment on reading between the lines were it not for the context and timing (FITNET, MEGA etc.)

 

[trishrhymes]

Well said! I've always said it doesn't take a genius to give good advice to a patient. All it takes is a conversation and maybe even a leaflet to help remember the advice. End of.

CBT is entirely inappropriate for this patient cohort or indeed ANY patient cohort. And I'm saying this as someone who has written CBT manuals for working with those who have addiction issues. The manuals demystify CBT and allow ANY appropriate adult to use the techniques to help someone with addiction issues - practical things like avoiding triggers, recognising unhelpful behaviours, putting some safeguards in place, keeping diaries, etc etc. There is no magic here. Just practical tips for people WANTING to change their behaviours around addiction issues.

Anybody who still believes that CBT can be useful in managing ME gets the thumbs down from me. Its so inappropriate, it's hard to know where to start. It's more of the double speak that only serves to confuse and obfuscate.

Excellent, @JoanDublin, we need people like you with experience in the field of CBT to write letters like this to Private Eye. I do hope you will do so.

 

[TiredSam]

Maybe someone should thank Dr Hammond for a balanced article but whisper in his ear that there is actually no such thing as CBT - or at least no proven special technique for ME/CFS that requires 'proper training'.

For some reason this brings to mind an image of a child proudly waiting to be congratulated on doing a good job of tidying their room, only to have their parent bend and whisper into their ear "You know there isn't really a Santa".

Harsh, but I agree it has to be done.

 

[Jo Best]

I appreciate your viewpoint. I had never heard of Phil Hammond until a few weeks ago so don't know his history before he came to my attention with the radio interview. If he's being as devious as you suggest, then he's made so many concessions that he may as well have thrown in the towel, and why choose Private Eye? But of course we can't ever let our guard down given the history of ME and how we have been treated, so your viewpoint is an important one.

I didn't mean to suggest he was being devious as such. I don't know if he's fully aware of what he's involved with or trusting of his colleagues, which would be perfectly reasonable as they are seen as experts. I think he's been medical advisor to Private Eye for several years. They were asked to cover the SMILE trial run by Esther Crawley of the Lightning Process in children with ME, as they had reported on an incident of Phil Parker (inventor of the LP) threatening to sue someone who'd said in public that the LP hadn't worked for them, but they didn't reply.

 

[TiredSam]

They were asked to cover the SMILE trial run by Esther Crawley of the Lightning Process in children with ME, as they had reported on an incident of Phil Parker (inventor of the LP) threatening to sue someone who'd said in public that the LP hadn't worked for them, but they didn't reply.

Thanks for that - they bloody well should have replied, of course. Hopefully now that it's not just patients complaining and the climate has changed somewhat with some journalists and scientists seeing the light we might get a better response, especially if they see that the bandwagon that's starting to roll is the kind of thing they like to jump on (injustice, abuses of power etc).

 

[Stewart]

So I've no personal or even professional dislike of Phil Hammond, and I hope that he is beginning to see the light or does so soon (perhaps if @Jonathan Edwards does write a letter in response to the article he could suggest that Phil Hammond attends the 2017 Invest in ME Conference) but the content of his article is entirely consistent with the bio-psycho-social illness model although I agree that it's fine on the face of it and I wouldn't bother to comment on reading between the lines were it not for the context and timing (FITNET, MEGA etc.)

I agree. There's nothing in Phil Hammond's article that Esther Crawley wouldn't be happy putting her name to. This seems to be the new BPS 'line' - "Of course ME is a serious biological condition and more research is needed to understand it, but that will take years and in the meantime CBT is the best treatment to help sufferers manage their symptoms."

 

[trishrhymes]

Maybe someone should thank Dr Hammond for a balanced article but whisper in his ear that there is actually no such thing as CBT - or at least no proven special technique for ME/CFS that requires 'proper training'.

I think part of the reason everyone these days seems to promote CBT is because the government has decided it's the solution for everything and is willing to fund it. So our NHS of the future will consist the following:

For broken bones: Cracked Bone Therapy
For a bang on the head: Concussed Brain Therapy
For fevers: Cold Bath Therapy
For underweight: Chocolate Binge Therapy
For overweight: Cabbage Binge Therapy

For the rest of us Convoluted Bullshit Therapy...

 

[TiredSam]

I think part of the reason everyone these days seems to promote CBT is because the government has decided it's the solution for everything and is willing to fund it. So our NHS of the future will consist the following:

For broken bones: Cracked Bone Therapy
For a bang on the head: Concussed Brain Therapy
For fevers: Cold Bath Therapy
For underweight: Chocolate Binge Therapy
For overweight: Cabbage Binge Therapy

For the rest of us Convoluted Bullshit Therapy...

For ME so far: Can't Be Treated.

Is it too much to hope that some therapists/centres are actually giving the best advice they can, but are forced to refer to their good advice by the brand name of CBT because of the prevailing climate?

 

[worldbackwards]

For ME so far: Can't Be Treated.

Is it too much to hope that some therapists/centres are actually giving the best advice they can, but are forced to refer to their good advice by the brand name of CBT because of the prevailing climate?

I think that's pretty much on the mark tbh.

 

[Cinders66]

This seems a well balanced article in general. However, as time goes by I tend more and more to think that the central problem in ME treatment is a false belief by therapists that there is something called 'cognitive behavioural therapy'.

Hammond says: 'Cognitive behavioural therapy can help establish these recovery routines and manage anxiety, but isn’t itself a cure.'

Surely what can establish good sleep routines is advice on good sleep routines, provided in the context of an explanation about the problem of PEM as a very real phenomenon. (If PEM is not real what is the justification for sleep regimens?) This is no different from my telling people with psoriatic knee arthritis to avoid cycling because it seems to make it worse, or people with ankylosing spondylitis to sleep on their stomach with no pillow to keep the back straight at night. Advice on sleeping position is the main reasons why you almost never see people bent double with spondylitis these days in the way one did in the 1970s. This is not Cognitive Behavioural Therapy, it is what doctors are routinely paid to do - to provide useful advice based on acceptance that without it real disability threatens.

Over the years I hardly ever referred patients to pain management clinics or clinics for CFS management because what they seemed to offer was 'a multidisciplinary therapy programme' led by a psychologist when what I thought the patient needed was sensible advice from someone with long term experience of the clinical problem. Hardly any of the psychologists had long term experience because they were all fresh graduates who would fairly soon give up trying to be a psychologist and do something else.

CBT as I understand it is supposed to be a specific technique for altering people's ways of thinking. If patients have already been given a leaflet giving a sensible description of the illness then why would one then need to change a way of thinking? If internet CBT did work that would seem to suggest that the traditional therapeutic interview is actually unnecessary. So what is the specific technique? My sense is that in trying to sell CBT to a wider audience through the internet that the enthusiasts may soon be demonstrating that there was no such thing in the first place. What about giving people an instruction book and then just sensible answers to questions when they arise. It begs the question why Standard Medical Care was so bad in PACE. Presumably because there were no appointments where patients could have sensible answers to questions (which is how Hammond seems to be painting CBT anyway).

Maybe someone should thank Dr Hammond for a balanced article but whisper in his ear that there is actually no such thing as CBT - or at least no proven special technique for ME/CFS that requires 'proper training'.

Agree
On radio 4 woman's hour a year or more back there was an interesting discussion on psychological vs medical treatment of reproductive related depression . An eminent gynaecologist professor John Studd declared women needed something along the lines of transdermal oestrogen and problem solved. The psychiatrist suggested a balanced mind body approach (including antidepressants and CBT I think) was also the right course of helping some women with symptoms etc but the gynaecologist was dismissive of what he viewed as unexpcessary. He was also dismissive of the new term premenstrual dysphoria which he said was a deliberate attempt to make PMS psychiatric /psychological territory (which I believe the CBT treatment framing of essentially good management advice and CBT model in CFS is designed to too). Interestingly he said that he'd tried to lecture at psychiatric conferences on the hormonal cause of some types of female depression but there wasn't interest and he said our beloved Sir Simon Wessely had recently declined his offer saying there wasn't time to fit his lecture in, which he interpreted as psychiatry wanting to keep their terrritory and not being open to physical causes of illlnesses they saw as their territory. There was obvious parallels to me with ME here, about 9mins in.
http://www.bbc.co.uk/programmes/b062kdd1

 

[Keith Geraghty]

The newly elected President of the Royal College of GPs said this week that she waned to get 3000 psychotherapists into general practice clinics to rescue GPs - this shows how popular CBT is a myth treatment. This number wasn't plucked from the air - the IAPT, "for improving access to Psychology Therapy" is advised by guess who Rona Moss-Moriss who has written parts of their guidelines with advice to promote 3000 more CBT therapists in the UK an to promote the BPS model.

This stuff is happening - and its happening now.

Whats also interesting is Crawley's role in a recent App to track kids as they undergo CBT
- Kings just had another psyc researcher awarded for a similar App
I believe we will see the internet and phones used to promote App like things that give you CBT on the move ------ the first hurdle is to prove CBT works.

I have seen companies begin to be contracted in to provide CBT to NHS GPs - so this is a growth industry

 

[Barry53]

I have seen companies begin to be contracted in to provide CBT to NHS GPs - so this is a growth industry

Malignant?

 

[A.B.]

I have seen companies begin to be contracted in to provide CBT to NHS GPs - so this is a growth industry

When is the bubble going to pop?

PS: if the PACE reanalysis is published in a journal, it could lead to a discussion on the quality of the CBT literature, which might very well cause the bubble to pop.

 

[worldbackwards]

When is the bubble going to pop?

PS: if the PACE reanalysis is published in a journal, it could lead to a discussion on the quality of the CBT literature, which might very well cause the bubble to pop.

Keith Laws has been doing that for ages, to little real effect sadly.

 

[Squeezer]

Yes, and yes.

I appreciate the article and Hammond's mea culpa. We could do with a lot more of that from across the board, and the changes of position have to start somewhere, sometime.

On the other hand, I am cynical about his timing and the purity of his motives. The time we needed this kind of acknowledgment and support was 2-3 decades ago. This is not a particularly brave or noble act at this point in the proceedings, when it is obvious to all with a dozen healthy neurons and a nanogram of integrity that the BPS school are about to be torn to pieces by the reality of their own shitty history, and he should not be given too much credit for switching sides now.

So, a genuine thanks, but it also only scores a bare pass in my book.

I'm with Sean and Jo Best on this. I've read Private Eye for years and was pleased to see something in there. BUT, I too am very sceptical about the timing.

I think the BPS school is trying to reposition itself and portray itself as reasonable and open and yet they grind on with their media campaign to get more young people signed-up to a snake oil programme whilst belittling, rubbishing or simply ignoring good biomedical research. That research, and the outstanding work of David Tuller, Mathees and others on PACE, is blowing big holes in the BPS schools credibility and so that school wants to ensure a route back into the ME tent. To put it another way, we need to see actions, not just words.

There was also a comment attributed to EC recently suggesting that the war over ME should stop. Even with his patchy knowledge of military history, Wessley should have been able to tell her that the quickest way to end a war is to lose it.

 

[slysaint]

I have seen companies begin to be contracted in to provide CBT to NHS GPs - so this is a growth industry

The vision:
http://www.civitas.org.uk/content/files/HealthoftheNation.pdf
Phil Hammonds part starts on page 104 (pdf page)
ref to Esther Crawley 115
"Most of our service is provided by a team
of occupational therapists, physiotherapists and
psychologists, and we are aiming to collaborate across
the NHS to serve children in areas that are currently
poorly served. The following is the future vision of our
service, and potentially other services, written by my
consultant, Dr Esther Crawley.
Paediatric chronic fatigue syndrome (CFS/ME). This
illness is relatively common (1-2.5% of children)
and potentially devastating.
Most children who access
specialist services have been ill for over 18 months and
attend less than two days of school.
About 50% of children are bed-bound at some stage
and therefore mothers often reduce or stop work with a negative
impact on psychosocial well-being and family
finances.Whilst children and families access both
secondary and tertiary health care, they experience
barriers to diagnosis and treatment.

Treatment for paediatric CFS/ME is highly effective.
Between 66% and 85% of children will recover with
specialist treatment at six months compared with 8%
who do not get specialist treatment.
Whilst this should be good news for children with CFS/ME, few in the UK
are able to access local specialist care. Children with
CFS/ME are ill and their symptoms are frequently
made worse by car travel so they are often unable to
travel to distant specialist services. Sending out tertiary
specialists to provide distant clinics is an expensive use
of a limited resource and specialists do not have the
local knowledge to develop an integrated care plan.
Our solution has been to recruit local therapists to be
part of the specialist team delivering specialist
treatment locally using a franchise model of care.
Therapists receive training and supervision to obtain
and maintain competences in the same way as all team
members. Supervision is delivered using phone/Skype
and occasional face to face contact. Therapists from
satellite clinics attend team meetings either in person or
using Skype. As with all franchise models, the satellite
clinics collect outcome measures, use the same
paperwork, leaflets and other tools as any other
members of the team. They offer research opportunities
to eligible patients as in the main centre enabling us to
test interventions across a range of locations.
There are many advantages to this model of care."

EDIT: This is the model that the OHC are also currently pursuing and hope to get NHS backing, they are also running trials.

 

[Hilary]

I can't help feeling that all our arguments and points of view are kind of built on sand as long as the UK medical establishment continues to use thoroughly inadequate diagnostic criteria and also persists in conflating ME with CFS/ME and with chronic fatigue. Shovel everyone who meets the Oxford criteria and who may have ME, chronic fatigue or whatever into the same bucket and some of them will no doubt recover without any intervention, or with CBT, or any number of things which they just happen to have tried (Lightning Process, chocolate, paper bag on head..)

 

[Jo Best]

IThere was also a comment attributed to EC recently suggesting that the war over ME should stop. Even with his patchy knowledge of military history, Wessley should have been able to tell her that the quickest way to end a war is to lose it.

Your comment reminded me of how Jonathan Edwards closed his reply to Stephen Holgate -

To put things in a nutshell, the way to ‘End the damaging battle over chronic fatigue syndrome’ to quote Esther’s New Scientist article, is for Esther, and the CMRC as a whole, to put out a clear statement that the shortcomings of past (and perhaps ongoing) studies of psychological and exercise therapies are understood and taken on board in future plans. Regardless of whether or not we think regular talking sessions and exercise management may well be helpful in the path to recovery, if we are to set a standard for CFS/ME research then we need to acknowledge that the evidence from trials from the PACE team and colleagues in the Netherlands is not reliable enough to be useful. The transition to good science we are all striving for needs to be complete and uncompromising - and seen to be so. (from this post #820 in Opposing MEGA thread - http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-41#post-786478

 

[KME]

Like others, I read this piece with caution, on the lines of sleeping with one eye open, but I’m beginning to like it. This is the first thing I've read from MD/Dr Hammond, I think. I’ve definitely experienced being “managed” by health professionals who made sure to use keywords like “real”, “biological” and whose underlying beliefs were therefore more shocking when sniffed out. But there are many features of this article that I find heartening:

• Differentiates between ME and CFS and acknowledges heterogeneity in the group currently being diagnosed as ME/CFS (creating a nice bit of distance from Oxford definition)

• Highlights central role of post-exertional malaise (in line with medical research and out of line with PACE proponents)

• Explicitly states that the illness is not psychological (important, because some are happy to acknowledge biological features, but then you find out they mean that you’ve somatised or just deconditioned your way to them)

• Highlights Institute of Medicine report (great for anyone reading who googles it)

• Plugs the MEA’s Christmas appeal (super given readership)

• References the IACFSME conference – may have been at it (really, you wouldn’t go or mention it if you were trying to stuff the medical-research-Jack back in the box)

• Acknowledges harm “Other patients are simply unable to increase activity and exercise levels, and some are made worse by trying. All interventions – drug or non-drug – can cause harm as well as benefit”.

• Acknowledges harm, lads! This bit is great. It’s as if he’s read Kindlon’s paper, and/or is just a good doctor.

• Veers into dodgy territory in the penultimate paragraph, but I’m conscious that he works with children (right?) where improvement and recovery rates are higher, and he uses important modifiers that others wouldn’t bother with, e.g. “many young people who have recovered enough to engage in a managed activity programme do very well”, i.e. improve first, then add activity, and “Many recover in time by gradually increasing activities when they feel able.” Hopefully future writings will clarify.

• Finishes with a crescendo calling for research on the most severely affected (boom!), reiterates that it is a “proven and classified neuro-immune disorder” (boom!) and states that “some people recover and some don’t” (important, because many in the BPS school and wider society believe, strongly, that we’d all recover if only we weren’t so darn ornery).

It can be uncomfortable voicing different views from those of colleagues, but it can also be important when you want patients, parents and colleagues in the wider medical arena to be clear that your views are different. Someone like this, who started out thinking ME was nonsense, and who has come as far as he has, can be influential in beginning to change the views of some of those on the inside of the BPS/conventional NHS approach to ME, who just won’t be reached by and aren’t ready for the views many of us on here like more. If you’re delivering CBT every day because you’ve been told by your consultant colleague that this person has a psychosomatic disorder, you’re more likely to hear and listen to MD who operates within the same system rather than swing all the way to researchers like Fluge/Mella/Naviaux/Hanson/Klimas/etc.



I agree with @Jonathan Edwards that CBT is not the tool required for the job of improving sleep and helping people to crash less. People with sleep apnoea are given sleep hygiene advice – we don’t call that CBT, or send them to a psychologist/psychiatrist for it. A good doctor or nurse specialist should be giving basic advice on pacing, sleep etc as the core of their management of a person with ME/CFS. If someone’s experiencing distressing psychological symptoms that do not respond to advice from that good doctor/nurse specialist, and that are not improved by appropriate management of orthostatic intolerance/thyroid issues/other physical issues that can create anxiety and co, and the person with ME/CFS wants to, then, and only then, should they be referred to a psychologist or psychiatrist who is mindful of the biological nature of ME/CFS and how debilitating it can be and will deliver care appropriate for that individual's psychological well-being, not just an automatic referral for CBT-because-they-have-ME/CFS. People with MS are not referred to psychiatry to be taught how to pace - that would be completely inappropriate, and it is for people with ME too.



I’m not keen on the idea of CBT becoming so widely applied, as @Keith Geraghty describes is happening in the NHS. I think there’s a real danger of psychologising symptoms and disease processes that we don’t understand yet. It smacks of just wanting to plug gaps, instead of acknowledging the gaps, being honest with patients about what we can and cannot do at the moment, and doing research to fill those gaps. There can be a desire to refer to someone, anyone rather than say “At the moment, this is all I can do to help you.” Health professionals need to be able to sit with that discomfort, and be brave enough to deal with the consequences and help the person adjust to that uncomfortable reality. There’s also a danger of papering over very real suffering with positivity when CBT isn’t very skilfully applied, something that can cause psychological harm and isolate people further.

 

[soti]

I agree. There's nothing in Phil Hammond's article that Esther Crawley wouldn't be happy putting her name to. This seems to be the new BPS 'line' - "Of course ME is a serious biological condition and more research is needed to understand it, but that will take years and in the meantime CBT is the best treatment to help sufferers manage their symptoms."

Yes, I've a feeling that what will happen is the BPS people slowly getting backed into the corner they didn't want to get backed into and saying how they thought that way all the way along (rather than, say, apologizing). Not exactly winning, though it's not losing either.