A (Second) Letter to Dr Phil Hammond

Dear Dr Hammond – I was very pleased to hear about your vision for the way ahead regarding CFS on your 25 October BBC Radio Bristol show with Jennifer Brea (available on listen again at 2-21)

You said: “I remember when HIV first hit in the 80s in the UK … it was the patients themselves who learnt all the research and became very assertive and demanded the best care… I see that same movement happening with chronic fatigue. We need to unite people across the globe and use their wisdom and experience to get better research and that’s the route to an optimistic future, I think.”
I very much agree that this is the way ahead. We patients are doing our best to move things along this path. Unfortunately “becoming assertive” in the way that has been so successful for HIV campaigners is being interpreted by some health professionals as ‘harassment’. I’m glad you do not share this view. We are not trying to be difficult for the sake of it. All we are trying to do is to help uncover the truth about this illness which devastates so many patients’ lives.
With this in mind, I wonder if you have the time to answer a few questions which arose from your interview with Jennifer Brea. You were kind enough to respond when I wrote to you about a year ago and any response you can make again now would be very much appreciated.
1) You mentioned to Jennifer that some of your young patients improve when they have graded exercise therapy at your clinic. When you responded to me last year, however, you said that ‘the mainstay of treatment ( at the clinic) is activity management’. Which of these do you actually use at the clinic? Or is it both?
2) You were also telling Jennifer that when you do graded exercise therapy, you cut back on the amount your patients are doing. I wonder if your approach is the same as that described in the Magenta protocol, where patients start on a baseline level which is the same as the median amount which is currently being achieved each week. The total level therefore remains the same but there is more consistency in the amount of exercise day to day. Once this baseline level has been achieved every day for 1 to 2 weeks, then according to Magenta, participants are advised to increase exercise by 10 to 20% a week. This means that any cutback in exercise is not substantial (really more a smoothing out than an actual reduction) and does not seem to last very long. Is this indeed what you do in the clinic? In which case, the overall emphasis seems really to be more about increasing the level of exercise rather than cutting back. Or do you do things another way? If so, why do you not use the same regime as Magenta?
3) Jennifer remarked that the regime in your clinic as you described it to her seemed very like pacing, but the Magenta advice to increase by 10 to 20% a week seems much less flexible than that. Even if the increase is not rigidly imposed, the therapist – and inevitably the patient – will feel under pressure to deliver it. The most crucial issue is: what happens if symptoms start getting worse? Are patients encouraged to cut back on exercise or to carry on regardless? The Magenta protocol doesn’t seem to say what the advice will be but the PACE protocol is clearly in favour of carrying on as far as possible in spite of worsening symptoms. Is this the advice given in your clinic I wonder? If so, then it certainly isn’t like pacing. And if otherwise, what is the advice given?
I’m sorry if these questions seem fussy and pedantic but it seems to me that a lot of the problem in understanding CFS is that so many factors are not precisely defined. From a short conversation, it can seem like a graded exercise program is very similar to pacing but the devil is in the detail. Similarly, so many researchers have made the mistake of assuming that patients diagnosed with different diagnostic criteria all have the same condition.
As you said in the interview: “we’ve noticed there are some kids who do improve when they have graded exercise therapy and cognitive behavioural therapy – and some who don’t, which suggests… either we’re dealing with different conditions or chronic fatigue syndrome is a variety of different things.” As Jennifer put it (with your agreement): “we have to make sure we are treating the right patients with the right treatments.” This is true not least because the wrong treatment can lead to long term disability.
So I couldn’t agree more that we need to distinguish between the different types of patients, but we’re not going to do this as long as we keep on using a dogs breakfast of different criteria to identify patients, frequently conflating ME/CFS with generic chronic fatigue and even making up new variations as we go along. I’m afraid that a prime example of the latter appeared in the original protocol for FITNET-NHS, which – for no very good reason – proposed using a version of the NICE criteria which did not require the presence of post-exertional malaise. I understand that this has now been scrapped but why on earth was it thought to be a good idea in the first place? Unless we start describing patients precisely and consistently, we will never get anywhere.
You mentioned that some of your patients do not respond well to graded exercise and it would be interesting to see if such patients fit the Canadian criteria rather than Fukuda or NICE. You also showed great interest when Jennifer described the use of the VO2 Max test to try to make sense of patient response to exercise. You even suggested collaboration. Would it not be possible to make that happen? It is indeed important to distinguish between the different types of patients so why are you not using some of these (what seem to me to be) obvious strategies to help you do so?
I think it is great that you are helping so many children who respond well to your therapies but you acknowledge that many do not and I can only agree that there is a very great need to distinguish between them, not least for the sake of those who you describe as having severe symptoms for a long time. As you say ‘that is where most of the attention needs to go’. Once again, I can only agree. I applaud what is obviously your heartfelt desire to help such children. As a concerned and assertive patient, I urge you to do whatever you can to bring that about.

 

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Swings amongst the Roundabouts

Wearing a Forced Smile

Time after time over the years, people with M.E. (myalgic encephalomyelitis) have had to put up with hearing total bunkum about their condition, but rarely does the ‘science’ get as flaky as last Thursday’s announcements on the ‘Smile’ Trial, a study which purported to assess the efficacy of the ‘Lightning Process’ for children with M.E. This process (known as LP for short) could be described as a cross between neuro-linguistic programming (NLP) and amateur dramatics, or (to put it less kindly though perhaps more accurately) as a form of brainwashing.

The precise nature of LP is wreathed in secrecy and participants are told not to disclose the details. However, according to anecdotal reports, patients undergoing the process are told that they are responsible for their illness and are free to choose to live their life without it if they wish. They are told they can achieve this through LP but it will only work if they believe in it. Everything they think and say must be positive. They must tell everyone they are better. When they feel any symptoms or negative thoughts, they must stretch out their arms with the palms facing out and shout “Stop!” If the process doesn’t work, they’re doing something wrong: it is their fault if they’re still ill.

Can you guess what results this trial has achieved?

Well, the researchers reported that LP combined with standard medical care produced better results than standard medical care alone. If you look at how they assessed this, the outcome was scarcely surprising. In common with other similar trials assessing ‘psychological’ treatments for M.E. (including the controversial £5m publically funded PACE trial) it was unblinded and there was very little in terms of objective assessment of outcomes. The results were almost entirely assessed using self-completed questionnaires. So in other words what they did was to tell the children they were better and then ask them if they were better. Just in case this didn’t achieve the desired outcome, remember that the children had also been told that the process would only work if they believed in it and if they didn’t recover it would be their fault.

Remember too that these were children being questioned by adults in positions of perceived authority.

Now what was that answer again, children?

Apparently we are supposed to treat this extraordinary procedure as a piece of serious science. After all, we have the science editors at the BBC and the Guardian as our role models. As with the many previous papers from the PACE researchers and their colleagues, these so called professional journalists swallow the whole thing without so much as a grimace and repeat it all back just as they have been told it, like performing parrots. The source on which they rely to tell them what to think is the Science Media Centre, a shadowy organisation which purportedly exists to provide a balanced view of science but in fact appears to promote the agenda of vested interests: in this case those who have built careers on the backs of patients with M.E., promoting their unproven psychological theories, misdirecting patients and their families, and effectively diverting funds from much-needed biomedical research.

On top of all the nonsense they spouted in Thursday’s coverage about the trial itself, these ‘journalists’ have also been coached to repeat yet again the habitual misinformation about M.E. researchers being abused by patients, apparently to such an extent that most of them have left the field altogether. This simply isn’t true. While one or two psychiatrists have announced their retirement, at least one purportedly in fear of his life, this doesn’t seem to stop them continuing to write about M.E. or, in at least one case, issuing further papers on the subject. These accusations against patients reached their peak at the Freedom of Information Tribunal which released important data about the PACE Trial. The Tribunal ruled that the accusations had been greatly exaggerated. Apparently the sole piece of evidence produced for all the so-called threats was that one of the researchers had been heckled at a lecture.  In reality, while any abuse which may occur is regrettable, by far the bulk of what these researchers complain about is simply legitimate criticism about abysmal so-called ‘science’ such as the Smile trial.

Meanwhile, those scientists researching the biomedical roots of M.E., of whom there are many worldwide – though precious few in the UK where psychiatrists take most of the funding – get on extremely well with patients, who in many cases raise the money they need to do their work.

Though such research remains grossly underfunded, progress is slowly being made. As Prof Jose Montoya announced at a conference just last week, it is no longer true to say that this is a mystery illness. It is one whose pathogenesis is slowly being unveiled.

Only a small proportion of such progress is reported in the UK media. The Science Media Centre don’t tell the journalists about it and, it seems, they can’t be bothered to look for themselves.

To add to the misinformation: on BBC Radio Four’s Today programme (approx 7-50 am), lead Smile researcher Esther Crawley grossly misrepresented the patient support group the M.E. Association by claiming that they didn’t want M.E to be researched in children. In fact, their complaint was not against research for children with M.E. in general, but the Smile Trial in particular, which they considered to be unethical. I have to say that I agree with them. Children frame their view of the world at least partially according to what adults tell them, so for them to be told they are not ill, contrary to their own perceived experience and to what is now understood about the physical reality of this neuroimmune condition, appears to be a betrayal of their trust. Research evidence by VanNess et al, among others, strongly suggests that it is harmful for M.E. patients to ignore the way they feel and push themselves beyond their capability. This can bring about a long-term deterioration in their condition. Unlike adults, children have a good chance of making a full recovery if they are simply allowed to take the rest they need. To encourage them to ignore the way they feel, as does the lightning process, is therefore particularly unfortunate. It can push children who might otherwise have recovered into a lifetime of chronic illness.

This is not the only potential damage to children. Others have been driven into anxiety and depression under the pressure of being made to act as if they are well when they are not. Some have even attempted suicide under the strain of this.

The Guardian article reported that Esther Rantzen’s daughter Emily had been cured of M.E. by the Lightning Process: another piece of misinformation. It was reported some years ago that Emily actually had coeliac disease, not M.E., and she described the pressure of going for several years after her so called ‘recovery’ pretending she was well when she wasn’t:

“I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it’. “

How many more children will be subjected to these various forms of harm following Thursday’s inaccurate coverage? And how long will it be till UK journalists start reporting M.E. responsibly?

Hillsborough Law – Shifting the Balance in Favour of Truth

Continue reading “Hillsborough Law – Shifting the Balance in Favour of Truth”

Letter to Dr Phil Hammond

Following last Saturday’s interview with Prof Esther Crawley on BBC Radio Bristol, I sent the following letter to Dr Phil Hammond who hosted the programme. I think it explains a large part of the reason why patients with M.E. have problems with Dr Crawley and why we don’t want her involved with the proposed MEGA study:

Dear Dr Hammond

Thank you for putting the concerns of ME/CFS patients to Prof Esther Crawley in your interview on Radio Bristol last Saturday. Unfortunately, as I have tried to explain as briefly as possible below, her responses were largely factually incorrect. I wonder if next time you have her on your programme, you could also invite the investigative journalist David Tuller whose original in-depth analysis brought the many and in some cases outrageous defects of the PACE Trial to wider attention. This led to numerous condemnations of PACE from eminent researchers in the field of ME/CFS. Here are just two of them:

Prof. Ronald Davis of Stanford University said: “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”

 Prof. Jonathan Edwards of University College London said: “It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”

 PACE’s recommendations for the use of CBT and graded exercise therapy (GET) for ME/CFS have frequently been reported by the British media but the important work of Mr Tuller has been ignored, so grossly distorting the information which has been made available to the British public. It would be an invaluable service if your programme could help to redress this imbalance.

When asked about the recent PACE reanalysis on your programme, Prof Crawley replied as follows: Continue reading “Letter to Dr Phil Hammond”

None The Wiser…

Does Esther Crawley’s latest research really tell us anything about the prevalence of pediatric CFS/ME?

 

After a quiet time over the holidays and into the new year, ME/CFS has been back in the news again. This time the coverage has in many ways been rather helpful. Dr Mark Porter, writing in The Times painted quite an accurate portrait of the condition: usually starting after an infection; involving numerous symptoms rather than only fatigue; the fatigue itself “persistent and recurrent”; and “exacerbated by physical or mental exertion”. There was even a description (though not by name) of the all-important post-exertional malaise. Pacing was also well described: “some of the strategies are counter-intuitive”, “it is important to avoid the boom-and-bust cycle”, only the exhortation to avoid daytime sleep seemed to me to be off the mark: in some situations this is a useful strategy to restore natural rhythm but in my experience as a patient it’s not always feasible or desirable. Nevertheless I liked Dr Porter’s perspective on the possible psychological repercussions of having ME: “feeling awful for months on end will dampen the spirits of the hardiest person” and severe ME at least gets a mention: “when severe it can leave victims housebound and often bedridden (the worst cases require hospital treatment)”. Not that the hospital is likely to have a clue what to do about it but at least there is some acknowledgement of severity.

The piece on the BBC News website focused more on the new study from the University of Bristol which served as the trigger for this latest splurge of publicity. Chronic Fatigue Syndrome at Age 16 Years claimed that the prevalence of pediatric CFS was 1.9% in 16-year-olds, higher than previously thought. The BBC article rounded this up to 1 in 50 and contrasted it with the 1 in 1000 (it said) who are actually diagnosed. Hmm.

The study also claimed that CFS affected almost twice as many girls as boys at age 16 and was more likely to affect children from disadvantaged backgrounds. According to the article, the study authors said this dispelled the commonly held view that CFS/ME was a “middle-class” illness, or “yuppie flu”.

I think I would dispute the fact that this is a widely held view any more (except perhaps among journalists), most of the general population having either forgotten about yuppies or being too young to have heard of them at all. But I suppose it is a useful enough finding – if it can be trusted, that is, but more of that in a moment… Continue reading “None The Wiser…”