Feedback to Dr Hoenderkamp

First, a brief word of apology: I hadn’t realised what a difficult process it would be to embed a load of tweets into this blog. WordPress protested in various ways at this indignity but I thought I had overcome them. The post looks fine on our desktop PC and my smartphone. So far so good. I hope it’s the same for you. But then I discovered that if I follow a link from a tweet onto a tablet, a whole load of duplicate tweets which I had battled hard to suppress suddenly appear out of nowhere. If this happens to you, please press or click or whatever it is these days on the title of the blog. ie Spoonseekerdotcom That should make it ok. If you then want to leave a comment – or look at the comments – press or click on the title of this particular post, ‘Feedback to Dr H’. You should then have access to the comments without the duplicate tweets returning (I hope!) If you get any other problems with the post, please let me know and I’ll try to help if I’m up to it. Grr. I’m not going to try a post like this again in a hurry – and please don’t ask about the PEM.

Tweeting this quote, which happened to catch my attention on Facebook, recently provoked a flurry of activity on my Twitter feed when the medical writer and broadcaster Dr Renee Hoenderkamp took exception to it as follows:

It was not my intention – or, I think, that of the person who made the remark on Facebook – to criticise all GPs, and it does not seem to me now, in the cold light of day, that anyone carefully reading my tweet should get that impression. I argued as follows:

Dr Hoenderkamp retorted:

And so on:

Patient Advocate Dr Claudia Gillberg also contested Dr Hoenderkamp’s interpretation of the original tweet:

If you are reading this, Dr Hoenderkamp (and I shall be inviting you to take a look) I hope you will agree that a pattern is emerging here: that by and large, to judge by these tweets, people with ME/CFS do not consider their GPs (or other GPs they have consulted) to be well informed about the condition. The tweets that came flowing in that afternoon told between them a very consistent story. There are many more of them below. These were just the tweets which came in from the ME patients who happened to be on Twitter that afternoon. Had I put out further tweets to ask for more, I think we could soon have got into triple figures and beyond. Even the tiny minority of patients who eventually managed to find an informed doctor recount how many others they tried before they ‘struck lucky’.

Of course, this only amounts to anecdotal evidence, but the results seem to me to be too consistent to ignore. What is more, I believe a poll among GPs would give a similar result. Here, tweeted by Joan McParland, are some comments from a questionnaire circulated among medical students after viewing the recent film ‘Unrest’ about ME. It is clear that they were surprised by how little they found they knew about the condition and baffled why this should be the case when so many people are so fundamentally affected.

NI students 1
NI students 2

It is good that Dr Hoenderkamp, unlike these students, feels she has been trained in ME but many patients tweeted to register their concern about what she might have been taught. Here are some of their comments on this issue:

A good way to find out more about the reasons why the PACE Trial (which claimed to provide evidence for the use of CBT and GET for ME/CFS) is now widely judged to have been discredited is to read Trial by Error, a detailed expose of the trial by pubic health lecturer and journalist Dr David Tuller. The first installment (of many) can be found here, though simply reading the summary will go a great way towards explaining why it has led to over a hundred eminent scientists and researchers writing an open letter to The Lancet calling for an independant review of the study and why CBT and GET are no longer the recommended treatments for ME/CFS in the USA.

The Journal of Heath Psychology special issue on the PACE Trial is also well worth a read and is available as a free download.

Moving on from PACE, the film Unrest, which has already been mentioned, is a powerful window into the world of severe ME, a chance to connect with some of those 25% of patients most severely affected, most of whom are long term bedbound, spending their lives confined to a single room and usually with little or no medical help. I have been drawing attention to the fact that doctors don’t understand ME but their understanding of severe ME is unfortunately so much worse. This must be the only condition where the sicker you get, the less attention you get from doctors. Most of them have absolutely no idea how severe the illness can become and no idea what to do about it if they see it. Again, I am not getting at doctors here. The problem is most of them aren’t taught about it so what can they do?

Unrest mainly skirts clear of PACE and other such controversy but it does not shirk away from sharing the raw experience of the illness. It has won numerous awards and can be viewed on Netflix.

Also recommended above are the purple booklet from the ME Association, which is a guide to the latest ME/CFS research written for doctors, and researcher Prof Jose Montoya’s question and answer session on ME, which appears in Paul Watton’s tweet above. There are many more such sources of information which could be mentioned but these few which I and others have suggested are a useful introduction to understanding the true nature of the condition, an essential antidote to the misinformation about ME/CFS which is all too abundant.

There is lots of opportunity for informed doctors to spread the word about the reality of ME/CFS. In his tweet above, Paul suggested you should do a video blog about it. A great time to do this would be in May/June when most of the eminent biophysical ME researchers come to Britain for the annual Invest in ME conference. I am sure they will be eager to talk about their latest research and ME in general.

Before returning to the many tweets of 27th January, here’s a particularly powerful – and upsetting – one from ‘motherofaliens’ which came in only the other day. Dr Keith Geraghty’s tweet, which led to it, is also very relevant of course:

Sadly – and shamefully – children are amongst those with ME who suffer most from the attitude of doctors. At least one prominent paediatrician does not recognise the existence of severe ME in children. Instead, the parents are blamed for the child’s condition and all too often are threatened with court proceedings. Only the efforts of Jane Colby of Tymes Trust and the paediatrician Dr Nigel Speight prevent such children being taken into care. Tymes Trust have dealt with over 150 such cases already and the problem seems to be escalating.

If you have read this far, Dr Hoenderkamp, thank you for doing so, and perhaps you are starting to understand the reasons for our concern. I shall end with some more tweets received in response to yours of 27th January. I hope I have included enough to give you an idea of the numbers who have had a similar experience. There were more tweets I could have included but embedding them in my blog is proving to be an arduous business, and I too have ME..

And finally, here is Dr Carolyn Wilshire, responding to Dr Hoenderkamp’s original tweet:

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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.

 

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?

Taking a Closer Look

Regular readers will know that I recently received a response from Professor Holgate to our 200-plus-signature email expressing concerns about the proposed MEGA study. “We are very appreciative of the enthusiasm being shown to pursue an exciting ‘omics-based research project in the field of M.E…” he said, with no mention of the various pressing concerns we raised in our email. You can read the whole of his message in this previous post.

It is a strange response indeed. It is like the shipping line which ran the Titanic writing to bereaved relatives to thank them for their interest in the general principle of oceanic travel. To carry the metaphor further, Professor Holgate is pleased to be in touch with us, but changes the subject whenever we mention icebergs.

I have now received a further response (addressing my response to his response), this one saying so little that I won’t bother printing it here, but once again referring us to the brand new MEGA website, which is indeed up and running at last.

If you’ve seen it, you were probably less than impressed. At first sight, it looks pretty much Continue reading “Taking a Closer Look”

FITNET Fiction

Here’s my latest response in the ongoing dialogue with Professor Holgate, CMRC Chair, about the proposed MEGA study:
Dear Professor Holgate
Thank you for your response to our email. I have not been able to consult with all the 218 people who signed the original communication but those whom I have been in touch with have expressed considerable disappointment that you did not attempt to address the specific issues we raised in our letter.
However, I await the new website with interest and hope that the FAQ section will at least deal with the two main issues we mentioned in relation to MEGA:
  •  the recruitment of a representative sample of patients (including the severely affected) who have the cardinal ME symptom of post-exertional malaise, and
  •  the suitability of Professor Crawley to take charge of such recruitment given the highly imprecise nature of her previous work in this field

Many people who signed the previous letter also left relevant comments Continue reading “FITNET Fiction”

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”

Why We All Need To Sign The OMEGA Petition

((Please note that I am not involved in organising the OMEGA petition.))

It’s taken me a while to sign up to the OMEGA petition because I’ve really wanted to find a way for the MEGA ‘biomedical research’ study to work.

Steps could be taken to improve the original proposal. As suggested in the previous post, the patient sample could be obtained not from the NHS clinics but from the existing UK Biobank. There are nowhere near enough samples in the Biobank at present but there is already funding for more, and more samples still could be added as further funding is obtained. Using the already established methodology, with patients coming through GPs, this could produce a reliable sample with the focus on PEM. There would be plenty of severe and moderate patients and – if my rudimentary understanding of ‘big data’ is correct – the sample need not be as large as the one from the clinics as patients with other fatigue conditions would not be included.

If Dr Charles Shepherd – or someone appointed by him – could be in charge of this then I am sure that the majority of the patient community would get behind the project. But would such a switch be achievable? That is the problem. The word is that Prof Esther Crawley is in charge of patient selection – and is unlikely to want to change the way it is done.

The involvement of Prof Crawley, of course, has been one of the main reasons why patients have been uneasy about MEGA right from its first announcement. Yesterday’s publicity about FITNET, Crawley’s upcoming online CBT study, has come as a timely reminder of why that is.

Yesterday’s reports were brimming over with misinformation. Continue reading “Why We All Need To Sign The OMEGA Petition”