BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

[user9876]

I
Anyone is able to reply to the BMJ or write to a newspaper or express their opinion about anything online in a forum - perhaps such as this - be there layperson or medical professional. At what point does 'free speech' become something at odds with the organisation you work for/represent and something you can/should be disciplined about?

When writing as part of an organization you are acting as their agent and representing their views. I know people who have written technical blogs for a company and they were rightly careful to keep to the values of the company. This is about brand management for an organization. At the same time there was someone who wrote a non-company blog who was probably more controversial but they were clearly his views not the companies. The problem comes when weight is given to views because they come from a particular organization which is respected. To take the point a little further I would argue that information gained whilst working for an organization belongs to the organization hence an employee is for example not free to talk about future product plans this can even cause big problems with the SEC.

If I were running the Essex service I would see two issues
1) That Collins and Newton damaged the brand of the service
2) That Collins and Newton demonstrated a lack of awareness of a disease they were treating and insulted their patients.

The Essex service initially seemed concerned about the first point. Where as I think the second is the significant one (especially given the poor brand image of fatigue clinics!). The question is how do they act with patients. Do they have sufficient knowledge of the disease they are claiming an expertise in. Are they aware of current research or just the highly spun PACE trial results. An internal review should look at these issues. They should also look at the clinics processes if some staff are unaware of current research then are others. And why is there a culture in the clinic that means members of staff feel justified in making such comments publicly and privately.

I generally see these as management issues and it suggests that the management of the service is poor and hence those in charge should go.

 

[Firestormm]

Thanks @user9876

If I had done similarly and used my name with the name of, let's say, my former career employer - a major private bank - then I can certainly see the issue from the bank's point of view - especially as it might pertain to reputation and possible damage to that reputation.

Given that I did not seek their permission to use their name or provide advance warning of my correspondence - which is another point (as a manager) I would be using when considering disciplinary action: namely these authors did not run the letter past their employers before seeking publication (and the same goes for that GP Trainer: Lewis).

However for the bank perhaps it was easier to say what the bank's own view were and how I might have differed/contradicted them. I wonder - in respect of your first point - whether the Service (any NHS service or indeed the NHS), has such clearly established views or whether Collings and Newton shouldn't be held to account against the NICE Guideline...

Anyway. It is a mute point I suppose. But you are right. It is the second point that is most concerning to me as well. I think if I was in charge - and of course I don't know the individuals or any of the facts really - than I would be looking to dismiss them from position. I still cannot fathom why they would want to resurrect a 'debate' from 2004 in the first place - let alone in the absurd way that they chose to. Makes no sense to me. No sense at all.

 

[Valentijn]

It is a mute point I suppose.

Moot!

 

[Sasha]

@Firestormm - I think the issue here is that Collings & Newton weren't posting their views on, say, stamp-collecting, but on a topic directly related to their treatment of patients in their care at Essex. The equivalent would be if you had written to the Times, even without mentioning your relationship to your bank, and expressed a view that people who buy bonds have probably stolen the money that they're depositing. (Let's assume that it would be as easy for anyone to find that you worked for your particular bank as it would have been for anyone to find out that C&N worked for Essex).

No-one would want to buy bonds from your bank, after that, and I think any bank would be acting reasonably to give such an employee the bum's rush (or at the very least promote them sideways out of trouble).

 

[Dx Revision Watch]

I am advised that AfME's Sonya Chowdhury spoke with Ms Buckley (Head of Rehabilitation/Essex CFS Service Manager) yesterday and that a report on their discussions is expected to be posted on AfME's website, today.

Firestormm wrote:

I still cannot fathom why they would want to resurrect a 'debate' from 2004 in the first place - let alone in the absurd way that they chose to. Makes no sense to me. No sense at all.

Consider the timing and content.

When the original editorial by Peter D White (Barts) was published in October 2004, there had been no responses beyond December 2004.

In 2007, the RR thread was revived with two additional comments posted by patients. Since October 2007, the thread has been dormant.

Then up pop Collings and Newton, on June 18, to resurrect a ten year old thread with what reads to me like a "stand-alone" piece.

As Esther12 has already observed, the Collings and Newton response doesn't cite the original Peter D White editorial within its text, nor do the authors list the PDW editorial in the references. This is not obligatory for a BMJ RR, but given the style of the comment, I would have expected to have seen the original editorial cited within it.

On the issue of style and inclusion of references in BMJ Rapid Responses, it is not at all unusual for RRs to be presented in formal, referenced "letter to the Editor" journal format, especially if authors are hoping for selection for inclusion in the BMJ's print edition.

(These recent RRs will not be eligible for consideration for the print edition since the editorial to which they are responding is an old one. RRs are selected within 12 days or so of an article's publication date with the aim of publication three or four weeks later, in the print edition.)

For me, this Collings and Newton Rapid Response smacks of a stand-alone commentary intended for another platform or for another section of the BMJ. (Uncommissioned Editorial, Personal View, Observations etc.)

Those who are familiar with my site know that I prefer to avoid speculation. However, I wonder in this instance, whether this piece might have been written for another purpose but was rejected.

It follows hot on the heels of the Julia Newton paper on POTS. That paper was press released and published in BMJ Open on June 16th and from the 17th - 19th, reported on by mainstream media. The press release might have gone out on the 14th or 15th. But that was the weekend, so BMJ may have press released the paper towards the end of the previous week.

The Collings and Newton commentary was published on June 18th.

It might possibly have been the case that after the Julia Newton paper press release had gone out, it was suggested to Collings and colleague (or they conceived the idea) to submit an uncommissioned commentary to BMJ to counter media coverage of the Julia Newton paper (or to some other platform). We've seen this before in UK media.

If this was the case, but the piece had been rejected, Collings and colleague would be forced to scratch around for an alternative platform for their "hypothetical deliberation" that was "intended to spark debate in the medical arena." [1]

So the authors dredge up a very old Peter D White editorial and publish it as an RR, instead.

(Peter Denton White and Barts are associated with the Essex CFS Service.)

But I am not party to the history of this commentary's conception and this is only speculation.


1 Response to ME Association, Noreen Buckley, Head of Rehabilitation/Essex CFS Service Manager, June 20, 2014

Suzy

 

[Dx Revision Watch]

@ Valentijn

Could you strip the post code off the copy of my BMJ RR please? I redacted it when I posted a copy, myself. Thanks.

 

[Dx Revision Watch]

Action for M.E. statement

http://www.actionforme.org.uk/get-informed/news/our-news/our-meeting-with-essex-cfs-service-manager

Our meeting with Essex CFS service manager

25 June 2014

The head of Essex CFS Service has told Action for M.E. that an internal review is underway regarding comments made by two of its team.

Last week lead physician Dr Anthony Collings and physiotherapist David Newton of the Essex CFS service commented on a BMJ article, What causes chronic fatigue syndrome?, sharing views we believe to be ignorant, insulting and absolutely unacceptable.

Action for M.E. CEO, Sonya Chowdhury contacted Noreen Buckley, Head of Rehabilitation and Essex CFS Service manager, and arranged a telephone meeting which took place yesterday evening.

Sonya detailed the serious concerns raised by people with M.E., carers and professionals in the field about the message that the comments gave, intentionally or unintentionally, and the impact for current and future patients of the service. Dr Collings and Mr Newton's comments potentially undo a lot of the hard work undertaken to challenge ignorance and raise awareness and acceptance of M.E., as we point out in our response at the BMJ website, submitted on Friday and posted yesterday.

Ms Buckley assured Sonya that the views expressed in their comments were not reflective of the values and beliefs held by staff and colleagues in her team and that their views in no way were endorsed by the service or Southend University Hospital NHS Foundation Trust. To this end, Dr Collings and Mr Newton's online comments are now attributed to being made in a personal rather than professional capacity.

Ms Buckley stressed that she takes M.E. seriously and is are working hard to build a service that provides positive outcomes for the near 500 people that use it each year, continuing to develop new elements of provision. She told Sonya that she was extremely disappointed that the service has been brought into disrepute in this way and wanted to assure people that this is not reflective of the service they will receive as patients.

Ms Buckley said that she is taking Action for M.E.'s views, and those of others, very seriously and is conducting an internal review into the situation. She is unable to disclose any further information at this time about this but agreed to meet with Sonya in September.

 

[Dx Revision Watch]

So that's alright, then?????

 

[N.A.Wright]

(1) Would these guys getting the boot be an unreasonable expectation if we were talking about MS? I doubt it. I realise you're pointing out the likely realities, though, not approving of the situation.

(2) I don't see a difficulty here - the effort was on the part of the two who wrote it, surely?

(3) But no-one puts someone else's name down as a co-author without their permission.

(4) Argh! So he stigmatises it by association with these qualities and then points out it's stigmatised. What a prince.

(5) I read them as agreeing with Collings and Newton, with the implication that patients are self-obsessed and it's "all about ME".

(1) I don't think the disease in question would have any impact on the way an NHS Trust would deal with this sort of problem. If there was a publicly perceived vulnerable patient group, say children or frail elderly, that was particularly affected, that would certainly change the focus, and of course if terminal illness and palliative care were involved that also would exercise the strength of the management's response.

(2) We don't know the circusmstances that this really odd document came into existence - from the perspective of the management they will need to establish who all the contributors were and what level of input each had, others not named may have had a role. It may have been an accademic exercise, it may have been nothing more than an exchange of tweets cobbled up into something one individual thought was meaningful.

(3) I've seen a number of instances where on the basis of a brief conversation, telephone call etc, someone has added a name to a document believing that everything had been agreed, when that was far from the case. Never underestimate human stupidity or capacity for excessive enthusiasm - or indeed malicious intent !

(4) Based on that short newspaper piece I find it very hard to have sympathy for Dr Collings - but innocent till proven guilty etc.

(5) I can't follow an interpretation of Lewis agreeing with the meme argument when he plainly jokes that Collings and Newton are part of the infection process and so I don't see how that is other than taking the products of micturation out of their argument. I dunno, maybe there's a Welsh thing going on.

 

[Dx Revision Watch]

Also, some sections of BMJ, like Editorials, Personal Views and Observations are often behind paywalls, apart from the first 150 or so words, and not readily available for public scrutiny.

If the commentary had originally been intended for another section of BMJ, that may have influenced its content.

However, whether the authors are writing for a predominately professional audience or for a public or mixed audience, they remain representatives of Essex CFS Service, and it's not appropriate to edit the author details on the Rapid Response to "personal capacity" without a declaration of affiliation with Essex CFS Service.

 

[Firestormm]

Action for M.E. statement

http://www.actionforme.org.uk/get-informed/news/our-news/our-meeting-with-essex-cfs-service-manager

Our meeting with Essex CFS service manager

25 June 2014


Ms Buckley assured Sonya that the views expressed in their comments were not reflective of the values and beliefs held by staff and colleagues in her team and that their views in no way were endorsed by the service or Southend University Hospital NHS Foundation Trust. To this end, Dr Collings and Mr Newton's online comments are now attributed to being made in a personal rather than professional capacity.

As I said above in my deliberations, it would be useful to know what the 'vales and beliefs' of the (other) staff that comprise the Essex CFS/ME Service are/were methinks. Not that we'll learn of them I don't suppose. It would be nice to hear from patients who have/do attend this service as it is always from others who use the NHS services provided.

 

[Firestormm]

Some interesting and informed comments on AfME's Facebook page below the statement above:

https://www.facebook.com/actionforme/posts/10152500233998209

 

[Sasha]

(1) I don't think the disease in question would have any impact on the way an NHS Trust would deal with this sort of problem. If there was a publicly perceived vulnerable patient group, say children or frail elderly, that was particularly affected, that would certainly change the focus, and of course if terminal illness and palliative care were involved that also would exercise the strength of the management's response.

(2) We don't know the circusmstances that this really odd document came into existence - from the perspective of the management they will need to establish who all the contributors were and what level of input each had, others not named may have had a role. It may have been an accademic exercise, it may have been nothing more than an exchange of tweets cobbled up into something one individual thought was meaningful.

(3) I've seen a number of instances where on the basis of a brief conversation, telephone call etc, someone has added a name to a document believing that everything had been agreed, when that was far from the case. Never underestimate human stupidity or capacity for excessive enthusiasm - or indeed malicious intent !

(4) Based on that short newspaper piece I find it very hard to have sympathy for Dr Collings - but innocent till proven guilty etc.

(5) I can't follow an interpretation of Lewis agreeing with the meme argument when he plainly jokes that Collings and Newton are part of the infection process and so I don't see how that is other than taking the products of micturation out of their argument. I dunno, maybe there's a Welsh thing going on.

(1) I really hope you're right, but ME is a very weird area. People have linked to evidence that Ms Buckley (the head of the Essex CFS Service) seems to hold the BPS view of ME and I wouldn't trust someone with that model to hold a review that patients would consider fair. Her concern, in her response to the MEA and AfME, was indulgent towards the authors ("not necessarily their view") and seemed more concerned that they'd posted their views where patients could see it. Do you think it's likely to be Ms Buckley who will be responsible for the review? Do you think that anyone higher up the chain in the hospital trust would be aware of what has happened? I don't know how these things work.

(2)/(3) Wow... I guess I was underestimating human stupidity.

(4) Unless someone put his name on that RR without his knowledge I think we know enough about his views already.

(5) Here's Sam Lewis's piece:

Almost all of my patients with CFS/ME are self-diaqnosed, so when they say 'I think have "ME", I immediately agree. [I take this as him saying that patients are coming to him saying they have ME and he agrees they have "themselves".]

Wherever I go , there is "ME" ? [Wherever I go, there I am: again, patients have "themselves".]

Presumably those cases transmitted by Anthony Collings "MeMe" constitute the homozygous form ? [A play on ME-ME = meme.]

I initially took this as him backing up a view of ME being all about self-absorption but it's so plain weird I can't make any sense of it. Maybe he's saying a lot of patients over-self-diagnose with ME. Who knows? You're right, though, it's not as clear as I had thought it.

 

[Undisclosed]

The attitudes of some so-called professionals towards ME is disgraceful.

Personal views do matter if you are publicly associating them with professional credentials.

 

[Sean]

This is a very odd episode. Not really sure quite what to make of it all.

 

[Firestormm]

Personal views do matter if you are publicly associating them with professional credentials.

In this care his credentials being his association with an ME/CFS Service - or that he was a consultant physician and doctor?

I am not sure I would have been as disgusted had these been the views/deliberations/expressed madness of any old 'doctor' as I was that it came from two people attached to a service dealing with patients who shared my diagnosis.

Dunno.

 

[Bob]

One good thing to come from all of this, is that the entire patient community is speaking with one voice.
(Even Action for ME have clearly stated that ME is an organic disease and have called for disciplinary action.)

 

[Undisclosed]

In this care his credentials being his association with an ME/CFS Service - or that he was a consultant physician and doctor?

I am not sure I would have been as disgusted had these been the views/deliberations/expressed madness of any old 'doctor' as I was that it came from two people attached to a service dealing with patients who shared my diagnosis.

Dunno.

I think every doctor no matter what there position is should not be making comments about ME being a meme or whatever the insult du jour is. It just makes it worse if the doctor works directly for ME patients in some capacity.

We can't give any medical professional a pass for making insulting ignorant comments just because they don't work directly with ME patients on some level. It's never ok in my opinion.

 

[N.A.Wright]

When writing as part of an organization you are acting as their agent and representing their views. I know people who have written technical blogs for a company and they were rightly careful to keep to the values of the company. This is about brand management for an organization. At the same time there was someone who wrote a non-company blog who was probably more controversial but they were clearly his views not the companies. The problem comes when weight is given to views because they come from a particular organization which is respected. To take the point a little further I would argue that information gained whilst working for an organization belongs to the organization hence an employee is for example not free to talk about future product plans this can even cause big problems with the SEC.

That's certainly an accurate summary of the broad position in the private sector. Something rather different might be in play were the organisation concerned an academic body where the issues of academic freedom need to be supported, and from a different perspective, across all parts of society where the question was of legality, public safety and the need to support whistle blowers.

Of course in the case of Collings and Newton no such high principles appear to be in play but we (at least us Brits) need to be extremely concerned about creating circumstances in which NHS employees are limited about what they can say publicly. At present the system is heavily weighted against NHS employees much to the detriment of the health service. The NHS is a (near) unique organisation, it is public, it is academic, it is professional and increasingly it is being asked to behave like a business, in that context, even at the risk of some employees saying/writing daft and embarrassing and insulting things, I would strongly prefer that any error be in favour of openess than toward corporate control.

If I were running the Essex service I would see two issues
1) That Collins and Newton damaged the brand of the service
2) That Collins and Newton demonstrated a lack of awareness of a disease they were treating and insulted their patients.

The Essex service initially seemed concerned about the first point. Where as I think the second is the significant one (especially given the poor brand image of fatigue clinics!). The question is how do they act with patients. Do they have sufficient knowledge of the disease they are claiming an expertise in. Are they aware of current research or just the highly spun PACE trial results. An internal review should look at these issues. They should also look at the clinics processes if some staff are unaware of current research then are others. And why is there a culture in the clinic that means members of staff feel justified in making such comments publicly and privately.

I generally see these as management issues and it suggests that the management of the service is poor and hence those in charge should go.

There are (broadly) two parallel schemes of management within the NHS - there is clinical managment, those responsible for the conduct and delivery of treatment and care, and there is the operational management - largely number focussed which deals with making the delivery of treatment and care possible. There are inevitabe tensions between these two strands and when the system works well this tension is actually creative, things of course do not always work optimally. I wouldn't blame the number people for concentrating on the 'brand' (given the business model they are being forced into) in circumstances where the clinical management has made an error. But of course from the patient perspective, it is the source of the error that needs to be addressed not the fall out from it.

Unfortunately even when dealing with patient concern in this case, changing the PACE focussed perspective would be very unlikely to be part of any corrective process because both clinical and operational management will take their lead from the NICE guidelines and/or the Local Clinical Commissioning Groups (the money) who will also be constrained by NICE. This doesn't mean change isn't achievable - moving from the cure fantasy inherent in PACE to a supportive illness managment model would be wholly feasible but even this wouldn't be a rapid redirection, contracts would need to be renegotiated and staffing persectives changed accordingly.

It is unrealistic to expect wholesale managment change in the Southend service, because it is very likely that the sevice as provided meets the provision and standards prescribed by NICE and the NHS standards regulator. Long term a change in the clinical lead is inevitable, which may for pragmatic reasons come about sooner rather than later - the key question would be if the service could change for the better in consequence or at least contemporary with a new clinical lead taking charge.

 

[Esther12]

I don't see how any honest and serious review can detach this letter from the wider problems with those making money from CBT/get making exaggerated claims about the value of their treatments, the spin around PACE, and the refusal to release the trail's protocol defined outcomes. Tbh, I don't expect much from this review though. The NHS's attitude to CFS is one that happily tolerates disdain and quackery.