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:


Have You Been Harmed by PACE?

Dr Sarah Myhill has written a comprehensive letter of complaint to the General Medical Council about the conduct of the authors of the PACE Trial. You can find the full text here. This is a courageous letter which states very publicly and unequivocally what a great many patients have been saying for some time: that in the way they have conducted the Trial, the PACE authors are guilty of fraud.

Dr Myhill is asking for patients who have been harmed by the Trial to support her by sharing their experience with the GMC using a template letter which can find it in a Word document here. Please try to find the time and energy to do this if your health allows. Dr Myhill is taking on a lot in trying to help patients in this way. I believe she deserves the support of us all in return.

Craig Robinson, from Dr Myhill’s team, explains in more detail as follows:



**PLEASE DO COPY YOUR LETTER OF SUPPORT TO – if you feel comfortable with doing so**


The GMC is the UK doctor’s regulatory authority – the General Medical Council. Patient support is sought from all patients who feel they have been harmed by PACE. You do not have to be a UK citizen.

PACE is the study ‘Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. (2011)’, published in The Lancet.

SEVEN other medical doctors are supporting this complaint but wish to remain anonymous – they are concerned about the impact of such “whistle-blowing” on their future careers within and without the NHS.

The complaint is one of Fraud, namely:
–fraud by false representation
–fraud by failing to disclose information
–fraud by abuse of position

There are also numerous breaches of:
–GMC Guidance on Good Medical Practice
–GMC Guidance on Good Practice in Research
–GMC Guidance on Consent to Research

Dr Myhill is asking for your help.

Please read the letter of complaint and also the ‘PACE patient support letter‘.


We want people who have been harmed by PACE to write in support of this complaint. You are free to use the PACE patient support template letter. You could have been harmed in any of these ways and possibly others too (please see further notes about this further down the post) :

• suffered damage (including physical, mental or emotional distress) as a result of CBT.
• suffered damage (including physical mental or emotional distress) as a result of GET.
• been denied disability benefits because the physical nature of your disease has not been properly recognised and/or you have been told you have a psychological condition.
• have been denied industrial compensation for your disease because the physical nature of your disease has not been properly recognised and/or you have been told you have a psychological condition.
• have been denied referral or funding for referral to a physician specialising in the biomedical approach to treating CFS/ME.

You do NOT have to have been diagnosed or have fallen ill with CFS/ME after PACE was published [March 2011] to support this complaint.

So, for example if you were diagnosed/fell ill in 1980, but have recently been refused benefits as a result of PACE [for example, for not engaging in CBT or because your illness was considered psychological) or maybe you have suffered mental distress as a result of PACE (for example, benefit applications were more stressful because your illness was considered psychological) then you CAN support this complaint. It will help our case to have as many support letters as possible.

If you feel you have even the smallest ‘case’ for inclusion then please do submit a letter of support – it is incumbent on the GMC to prove that you have not been so affected, not for you to prove that you have!

Please do email if you are in doubt or need help phrasing why you have been harmed by PACE. Please be patient – we will respond as quickly as possible. See the hotmail email address below.

Just put your reasons for supporting this complaint in the relevant section in the PACE patient support letter and fill in any other portions that need filling in [all marked in red] and then:

1–email it to – Sir Terence Stephenson is the Chair of the GMC

2–if you can, please send your letter by post too, here is the address –
Sir Terence Stephenson
General Medical Council
Fitness to Practise Directorate
3 Hardman Street
Manchester, M3 3AW.

3—if you feel comfortable with doing so, please can you copy your letter of support to Dr Myhill at [in the past the GMC have denied receiving letters of support and having physical copies to collate and send to them has been a very powerful tool]


We cannot engage in a running commentary on progress but will give updates as and when possible and necessary.

We know that GMC employees or people who report to the GMC are members of the Dr Myhill groups and so we do have to be circumspect.

You may feel that the letter of complaint could be improved – good!

In 15 years of dealing with the GMC, and other regulatory bodies, one thing above all has become clear: these regulatory investigations are like a game of chess. A marathon not a sprint. You have to plan 6 moves in advance…

Essentially, we are saying – trust us! Between us we have won 30 GMC cases as defendants and numerous cases across many regulatory bodies as complainants.

Thank you.

Here’s Craig again with an update:

N.B. The harm done to you does NOT have to fall within the 5 broad categories listed in the template letter. ANY harm or ANY DISTRESS caused by PACE is ”enough”. See as follows for an example of how another patient has put it in her great letter:

  • I have suffered mental distress as a result of PACE. For example, benefit applications, and assessments were more stressful because my illness was considered psychological
  • Visits to doctors, and consultants, and NHS emergency departments are more stressful because my illness is considered psychological.
  • I am denied treatment because my illness is considered psychological
  • I am accused of wasting time, and lying, and treated with contempt and suspicion because my illness is considered psychological
  • My word and experience is dismissed because my illness is considered psychological, and I am labelled as ‘mentally ill’.
  • I am labelled as a delusional patient because of negative connotations implied by doctors and NHS staff.
  • It appears all my other health issues, and concerns are now considered psychological, and therefore dismissed as imaginary
  • I experienced extreme trauma, HARM & LOSS because my illness was considered psychological
  • I was targeted, and harmed after complaining, because my illness was considered psychological
  • I am denied compensation for my disease because the physical nature of it has not been properly recognised and/or told I have a psychological condition

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.



Looking at the Evidence

As you may know, a few days ago the Journal of Health Psychology published a very important special issue critiquing in depth the controversial, deeply flawed PACE Trial, a study which purported to provide evidence for the use of graded exercise and a very specific type of CBT in the treatment of ME (myalgic encephalomyelitis, also known – misleadingly – as chronic fatigue syndrome or CFS). Congratulations to the journal’s editor Prof David F Marks for taking the trouble to inform himself about the true situation regarding ME. He is one of very few scientists and health professionals who despite having no personal or pre-existing professional interest in the condition has made the effort to look at the facts and realise that – unlikely as it may seem to many – the PACE Trial and similar ‘research’ into ME by those with a fixed biopsychosocial mindset really is every bit as flawed, misleading and potentially damaging as patients have been claiming for years. Dr David Tuller, Prof James Coyne, and Prof Jonathan Edwards are other rare free thinkers who have not been afraid to get informed and challenge the status quo – or to put it another way, to point out that the emperor is naked because that is what he is.

By contrast, those who persist in defending PACE give the impression that they have simply taken the word of the PACE investigators rather than study the actual evidence. Prof Malcolm Macleod, who was trotted out by the Science Media Centre as an ‘expert’ in response to the special issue, seemed only aware of one of PACE’s many flaws and seemed to base his defence of the study chiefly on the ‘doubtful provenance’ of some of its critics. It is another example of people being judged on the basis of who they are, rather than what they say or where the truth lies.

As for Prof George Davey Smith, who left the JHP’s editorial board in protest at the PACE-related special issue, he seemed to positively gloat about his ignorance of ME at last year’s CMRC conference, this in spite of his involvement with the much vaunted though controversial MEGA study, and even referred to it as CSF rather than CFS, apparently mixing up chronic fatigue syndrome with cerebrospinal fluid.

Speaking on Twitter, David F Marks described his disappointment that George Davey Smith did not ‘offer a pro-PACE commentary instead of leaving in a huff’. He (Marks) has offered to debate with PACE supporters in a public forum at any time. I don’t suppose he’ll get any takers. That would put them to the trouble of actually sitting down and informing themselves of the true situation.

Marks, meanwhile, has studied the facts and has drawn his own conclusion. He says: ‘“The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.’ To which I would add: ‘also an exercise to try to protect the reputations of a small number of health professionals who have built their illustrious careers on the back of an unproven ‘biopsychosocial hypothesis’.

Meanwhile the proponents of PACE continue to take the cream of the research money here in the UK, so inhibiting much-needed biomedical progress; unsuspecting patients are given potentially damaging courses of graded exercise; and the number of parents threatened with ME-related child custody proceedings appears to be spiralling upwards, all this fuelled by the unproven biopsychosocial hypothesis.

As The Times article reported with great relish, James Coyne allegedly called the departing Davey-Smith ‘a disgusting old fart neoliberal hypocrite’. This may seem a little harsh but if language like that helps to get the truth about PACE in the newspapers, then so be it as far as I am concerned. And in view of the human suffering which underlies the farce that is PACE, perhaps such language is restrained.

Note: David Tuller’s response to the Science Media Centre’s ‘expert comments’ on the JHP special issue is here.


Hillsborough Law – Shifting the Balance in Favour of Truth

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


Spreading the Word


Dr Phil Hammond’s latest column in Private Eye is called ‘Trial on Trial’. You may remember he wrote quite a helpful column about ME just recently. This time he writes in response to criticism from a doctor who got in touch to say:

“Every illness has a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone’s illness is likely to lead to a much poorer outcome. This ‘triple diagnosis’ applies to any complaint you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME, where any suggestion that there might be a psychological or social component leads to criticism. That CBT is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.”

It does become tiresome having to deal with such ‘arguments’ time and time again. Once upon a time it was ‘yuppie flu’ that popped up in every article about ME. Now, at long last, that is slowly fading away. Yet now we have to deal with this endlessly repeated idea that ME patients have an unreasonable and unsubstantiated resistance to any suggestion that there might be a psychological component to our illness. People with cancer are happy enough to go for CBT, we are told. So what’s our objection? Continue reading “Spreading the Word”


The OMEGA Petition – Email to Professor Holgate

This email has been sent to Professor Holgate of MEGA. Many thanks to all those who signed. (Whoops! missed a few… Total signatures now updated to 221)

((Please note that we are not the organisers of the OMEGA petition.))

Dear Professor Holgate – We comprise a number of M.E. patients and carers, 218 in all. Please see our signatures at the end of this email..

We are writing because we notice your suggestion in your letter to Professor Jonathan Edwards that OMEGA (the petition opposing the MEGA study) has attracted so many signatures due to the support of Invest In ME. We are writing to assure you that we patients and carers are able to look at the evidence and make up our own minds on such issues.

Here are some of the grave concerns that we have about the MEGA study as it has been proposed. It seems likely that you have heard many of them before but in view of your professed perplexity about the OMEGA petition, we want to make sure you are aware of the issues. For the same reason, we are copying this to the other members of the MEGA team and to those you copied in to your letter to Professor Edwards. We are also sending a copy to Professor Edwards himself, and the email will be posted online at the Spoonseeker blog.

Our concerns about MEGA include the following:

Patients from the NHS CFS/ME clinics (apparently the intended source for MEGA) will not yield a representative sample of people with M.E. The reasons for this include:

  • Most severely affected patients cannot access the clinics and so will not be included in the study.
  • There will be an inevitable selection bias towards the mildly affected because
    • the clinics will tend to select such patients as those most likely to respond to the behavioural therapies on offer, and
    • the more severely affected patients will be more likely to reject such therapies – and hence the clinics – as inappropriate.
  • Other more severely affected patients will no longer be on the clinic’s system
    • either because they have not responded well to the therapies, dropped out, and not been followed up (as feedback suggests is often the case) or
    • they are among the long term sick who are no longer on the system because treatment is time-restricted

There has been a suggestion, following representations from patients, Continue reading “The OMEGA Petition – Email to Professor Holgate”