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:


Swings amongst the Roundabouts

The Hidden Burden of M.E.

A couple of days ago, on Severe M.E. Day, I came across this post by ‘Terry’ (pseudonym) on an M.E.-related Facebook group:


I’m starting to write this at 4 o’clock in the morning. I have sleep reversal, and today, August 8th, is Severe M.E Understanding and Remembrance Day.

2 nights ago, seeking support, I posted under the title “Injured” that I had damaged my ribs, asking if anyone would be awake late, very late.
People were lovely and kind, some offering a number of solutions.

What the responses made me realise, however, is that I hadn’t done a very good job of explaining the severity of my condition generally. In fact, in crisis due to the injury, I hadn’t been able to explain anything at all.

When I joined the group, I never introduced myself and didn’t explain that I have a profoundly severe case of M.E. So, it feels a little bit like it might if one was gay and not ‘out’. Everybody’s assuming how I identify and offering solutions based on that mindset.
So, in honour of inclusivity and Severe M.E Understanding and Remembrance Day, I’m coming out, but just a little to save on your patience:

I haven’t left my home, bedroom or bed, since 1993, apart from an imposed house move, by ambulance and stretcher in 2003.
For 25 years I’ve been 100% bedbound and “bodybound” – barely able to move in the bed and only occupying two positions, either lying on my left side or propped by pillows for just long enough to eat.
At a very early point it was threatened that I would be removed from the practice list if I requested a home visit. The GPs refused to visit for 23 years “unless there was a medical need” . That is, they would come out to assess e.g a chest infection but there would be no management of my condition of severe and profound M.E.
I’ve recently actually been visited by a new GP, after the old ones retired (but only because of another acute injury) who has offered to visit me once a year. You might say ‘big deal!’ yet this one visit per year is an amazing, unprecedented and vast improvement.

I only gained access to the Internet in the spring of 2016 and find that most of the M.E groups on Facebook are solutions-orientated.
After the cumulative effects of 39 years I’m physically fragile, and exhausted beyond belief, and cannot even tolerate someone else helping. No interventions are possible.
I’m intolerant to all medication and frequently experience an inverse or idiosyncratic reaction. I’m barely able to move and can’t soak in the tub, visit a chiropractor or even apply creams designed to relieve the pain and inflammation.

Due to the severity and chronicity of my M.E I wasn’t/am not able to take any action whatsoever to alleviate or treat the extreme and acute pain caused by the injury.

The reason that I’m writing this is that, I’m sincerely glad for those who are able to follow protocols and improve their quality of life, but we need to be aware that this is not the case for everyone in the group.
There are those of us still out here for whom nothing has changed, because nothing is able to be changed.
We are invisible, ignored and sidelined and for the sake of the inclusivity of our group I’m hoping to make people living with very Severe M.E a little less invisible, once again, today.

(End of Terry’s post.)

This drastically abridged version of Terry’s situation seems to me to be eloquent evidence of:

1) how very extreme severe M.E. can be

2) the extent to which severely affected patients are – quite openly – neglected by health professionals

3) the way such patients feel they have to hide the full extent of their situation not only from people in general but even from people with M.E. who are less severely affected.

Most of us with M.E, have some experience of this feeling that we need to ‘hide away’ or ‘stay in the closet’ about our condition, usually because we can’t quite face the sheer extent of people’s ignorance about what we’re going through. In particular, we can’t face the likelihood that they’ll say something entirely inappropriate in an effort to try to be helpful and thereby trigger emotions we can ill afford the energy to experience.

How much worse must this be for those who are as severely affected as Terry, for whom the gulf of understanding is so much greater, who are even more likely to be met with jaw-dropping disbelief instead of appropriate empathy.

By and large this ignorance isn’t other people’s fault. It should be up to the health profession to inform them. But health professionals are of course the least likely to understand. They are the most likely to listen to the lies of those of their number who have built their careers on unfounded untruths about the condition. And this in turn gives them leave to neglect such patients, to ‘refuse to visit for 23 years’ as has been the case with Terry.

Also on Severe M.E. Day, the M.E. Association asked a question on its Facebook page:

If you have been severely affected by ME, or are currently severely affected, or are a carer or family member of someone severely or very severely affected, what changes would you like to see to the care that you (or the person you care for) receive from the NHS?

At the time of writing, many people have left comments or suggestions, including one from my wife Chris who has severe M.E. herself and is largely housebound but not (touch wood) bedbound for the time being. Chris wrote:

I would like to see the following charities really focus on improving things for severe ME people & lobbying NHS England for this.
The NICE guidelines do nothing for the severely affected….
I am thinking of a working collaborative of the MEA, Invest in ME, Tymes Trust, The ME Trust..working with each other & the 25% Group. (I have not included Action for ME because they are not trusted by many patients, ESPECIALLY THE SEVERELY AFFECTED owing to their close collaboration with the biopsychosocial NHS clinics & Esther Crawley).

1. to establish a dedicated flying squad of well informed, trained & compassionate health care professionals in each region of the country
2. to establish the exact numbers & a directory /database of people severely affected, visit severe ME patients WHO CANNOT TRAVEL even to any centres which are set up…
4. to provide help/ palliative care to them in their own beds at home
5. to liaise with their GPs/Social Services/carers etc

Such an initiative would not be ‘solutions-oriented’. The health professionals would not be trained to expect the patients to be up and about after a few months of encouragement. But they would be willing to assess and acknowledge the terrible situation in which so many severely affected find themselves, to allow them to be as they are without fear of blame, and to shine a light on the heavy burden such patients have had to carry, while the money which should have been spent on research to address the physical roots of their illness has been squandered instead on desperate attempts to justify exercise programmes.

If you agree with Chris’s suggestion or have some ideas of your own about what can be done to improve things for the severely affected, you can still respond on the MEA Facebook page. The post was on 8 August at 8-25 am.

Thanks to Terry for permission to repost their thoughts.


My Perspective on the MEGA PAG

At long last, I’ve submitted my list of reasons for resigning from the MEGA patient advisory group to the MEGA team, the other PAG members and a few other interested parties. I would like to be able to share it in full here but unfortunately the confidentiality agreement makes that impossible. So I shall stay with it as long as I can and then add in a few extra comments exclusive to this blog. Well, OK, quite a lot of extra comments…
Here we go…
I joined the PAG in the expectation that we would be able to make a substantial contribution to the design of the MEGA project, in particular the patient cohort selection, about which there had been considerable concern in both the ME/CFS research and patient communities. Recognition and  understanding of ME/CFS has been greatly hindered for many years by the muddled and inconsistent use of a host of diagnostic criteria. This problem was acknowledged by the recent US National Institutes of Health ‘Pathways to Prevention’ Report  and highlighted in a recent paper from the Cure ME UK Biobank team. It is recognised that broad criteria are needed for GWAS, but nonetheless it is of course extremely important  to select the right patients for the MEGA biobank, particularly as they might be used for research worldwide for many years to come. There has been particular concern because the MEGA team Principal Investigator, though regarded as an ME/CFS expert by her close colleagues, did not – to judge from her previous work – appear to have taken on board the importance of such distinctions.
Prior to the formation of the PAG, patient concern was to some extent allayed by assurances about the extensive role of the patient advisory group, both on the MEGA website and in person by Prof Holgate when he addressed the Forward ME Group at the House of Lords.
The MEGA website announced that provisions would be made for the PAG as follows:
We will:
  • use technology to make it as easy as possible to participate, given the limitations of the illness
  • ensure you are clear about your role and responsibilities
  • always treat you with respect and compassion
  • provide you with support that fits with your role and your needs as well as ours
  • always value the role you play in our team and the contribution you make to our work
  • listen to, and act on, feedback that you give to us outlining what we did/didn’t do and why
  • ensure you have the information you need to participate in the wider MEGA team effectively.
At his meeting with Forward ME at the House of Lords in December, Prof Holgate further explained:
  • the selection of patients would not be looked into until the PAG had been convened
  • the PAG would need to get together with the MEGA team to resolve the many queries that surrounded the condition of ME/CFS patients.
  • the PAG’ s method of working would be a matter for the PAG to decide. Each patient representative would be an equal of every other member of the MEGA team
When asked about the inclusion of the full spectrum of patients in samples for the study, Prof Holgate said:
  • this was a discussion the patient representatives would need to have with the scientists
The MEGA website summarised the role of the PAG as follows: “to provide people with ME/CFS, their carers, and people with an interest in ME/CFS, with a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study to better understand the biology of ME/CFS. Advisory Group members are asked to contribute to the MEGA study by:
  • actively engaging in the design of the MEGA study and to be participants in its conduct
  • identifying any potential practical issues for participants, questions, gaps or concerns about the study and to comment on study documents and procedures
  • contributing to, and informing, the planning process for securing funding, recruiting participants and disseminating results.”
Sadly, my experience was that the vast majority of these numerous assurances were ill-founded. The reality of the PAG differed greatly from what had been promised.
In the report I submitted, I went on to give examples of numerous ways in which the reality of the PAG fell short of what had been promised, but unfortunately I’m not able to share them here due to the confidentiality agreement. What I can do instead, I think, is to bring in my experience of patient involvement in research into another neurological condition I have. This has involved answering questions about how far people would be prepared to travel to undergo tests, and whether they would be prepared to go without their medication for part of the day while doing so, that sort of thing. In other words answering important but relatively mundane questions about patient participation in the practice of research.
In our discussions amongst ourselves in the PAG, we referred to this as working in a ‘consultative’ capacity, whereby the group would be approached to answer such questions as and when they were needed, an important role yet a very different one from that of collaboration, which was what we had been given the impression would be required from us for MEGA. At the time I left the PAG, some two and a half months in, it was still not clear which of these roles we were supposed to fulfil. We had certainly been told we would be collaborating, more specifically we were to be provided with “a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study”. The trouble was that to judge from our experience so far we were really only wanted in a consultative capacity. “To decide on the best colour for the envelopes,” was how I liked to describe it. Which was a joke – but admittedly not all that funny.
Though things were much more complicated than I have been able to describe, it was this uncertainty about the role of the PAG and the failure to get agreement on terms of reference which might have defined it, together with frustration about having such little scope for input into the project, which led to my resignation. Our attempts to get more clarity led to a souring of the atmosphere and it was hard to see how progress could be made. Far from being welcome partners in the development of MEGA, we seemed to be barely tolerated. Three of us felt that the time had come to resign.
My best guess about what happened is that we were always intended to be consultative but when patients protested so loudly about the plans for MEGA as originally announced, the PAG was seized upon as a way to quieten us down: “Don’t worry – the PAG will be there to make sure it’s all done properly!” Prof Holgate even went so far as to tell Forward ME that “PAG members would be the equal of every other member of the MEGA team” which I have to say struck me at the time as neither likely nor even desirable. Personally speaking, as someone who knows next to nothing about –omics, I wouldn’t expect to have the same authority as an –omics scientist on an –omics research project. But I suppose when your mindset is simply to say whatever it takes to get the troublesome patients off your back, you don’t stop to think too much about accuracy.
You’d have thought, though, that they would have had a plan to deal with the situation when the PAG turned up and – surprise, surprise – expected to have, if not the impressive powers they had been promised, at least some say in the matter. Wasn’t it reasonable for us to believe what we (and Forward ME) had been told?
Except perhaps, now I think about it, there was a plan to deal with the situation: to ignore the PAG until the more troublesome members resigned in frustration then turn on the charm with the rest.
So maybe it’s me that hasn’t thought this through…
But I can’t help wondering how the Forward ME representatives must feel about being given such a misleading impression of how things would be for the PAG? When they asked all those questions of Prof Holgate at the House of Lords, would they not have expected a higher degree of accuracy in the replies? Or are we in a situation where anyone in power can say  whatever they like, regardless of the facts? While patients are cast as troublemakers however much truth they have on their side…
Anyway, what happens next?
People have been asking if more resignations from the PAG are likely. My impression at the time was that others were considering it, but now I’m on the outside with everyone else, I don’t really know. According to the latest update on the MEGA website, “enthusiasm among PAG members is high” and since our departure “things have really picked up and are starting to fly”. If, as the website also reports, the PAG really had “substantial input” into the bid then things have changed a great deal for the better. If I’d known I was holding things back so much, I’d have gone before…
After the mistaken impression previously given about the role of the PAG, however, I hope I will be forgiven if I don’t entirely trust the MEGA website. The recent update reported that three of us had left the PAG and that our “ reasons for leaving have been taken on board”. This was particularly surprising as, at the time that update appeared, two of us hadn’t yet submitted our reasons for leaving. The update also stressed the intention that MEGA will apply for additional funding to include samples from the severely affected and that PEM will be a prerequisite for inclusion in the study. All of this, the update announced, had been agreed with the PAG. Well, OK, but both these strategies had already evolved before the PAG was even formed. They could hardly be described as a breakthrough now. If they had found a way to include the severely affected in the initial bid, then that would be news.
On the other hand, the update does at least acknowledge that those affected long term (who may not necessarily be severe) must also be included and it appears there has been some discussion of categorisation of samples. It is not much to go on but perhaps things are taking a turn for the better. It is not before time.
I certainly felt that the PAG had a great deal of expertise that was being wasted till now. There are some good people still in the group and I hope they are finally getting a chance to be heard. I’m sorry if my departure has increased the load upon them. I wish them all the best in their efforts to make their mark on the study. It is always hard to be sure of the root of things and perhaps the previous shortcomings of the MEGA/PAG relationship were due to oversight and circumstance rather than intent. Perhaps it is not too late for things to change.
And yet….
I’ve been torn in writing this post because I want to support my friends that remain in the PAG in their efforts to make MEGA better. I’m sure they will give it all they have but the honest truth is I don’t share their optimism. If I did, I suppose, I wouldn’t have resigned from the PAG. If things have changed for the PAG, I suspect it has more to do with spin than substance. I have to judge the study from my own experience, not from a single upbeat blog post. I have to look at the Principal Investigator, her previous work, the gulf between the promises and my experience of the PAG, the feeling of being played along just enough to keep us in tow. I think patients and informed professionals are right to express continued concern about the study. I have feared all along that it is likely to hinder rather than help our understanding of ME because of the way the patients are chosen and I’m afraid I have seen nothing to change my mind.

More Voices

Many patients and carers left additional comments for Professor Holgate of MEGA when they signed our recent letter. I wasn’t able to carry these over when I transferred the post to its permanent home, so I’m reprinting some of them here.  Sorry I haven’t included them all but I am grateful for all your comments and signatures nevertheless. I shall link to this post when I send the follow-up letter to Prof Holgate (which I hope till be tomorrow). I will post the follow-up letter here on the blog as well.

Here are the comments: Continue reading “More Voices”


Big Data Danger

This post comes mainly courtesy (again) of the astute Steve Hawkins, who responded to my concerns in the Getting Airborne post about the possible dangers of a MEGA Biobank. Over to Steve:

On the ‘big data’ front, I think that all genuine physical measurements will be useful if used in the right way. The danger comes from any extraction/filtering that uses diagnosis as the reference field. If they do that – and I’m sure Crawley and Co would, because they think they can diagnose without biomarkers – the results would be garbage, as there would be many conditions given the wrong name but appearing together.

On the other hand, filtering on key concrete signs like PEM, POTS, bedbound, etc. would pull up useful groupings whatever the ostensible diagnosis.

In the wider scheme of things, there are now a number of entrepreneuring projects aiming to collect ALL big medical data, and link all medical databases together. I read a good piece on this recently by one bioinformatician who is setting up a giant server, but I don’t seem to have bookmarked it. Here is a conference on getting all genomic information into ‘the cloud’ for free searching and filtering: And one from The Lancet, on the astronomical amount of data that is about to flow from mobile phones whose apps have turned into our version of Star Trek’s ‘tricorder’. All this info will go into ‘the cloud’:

So we’re getting to the stage where all data is useful: so long as it is faithfully produced. Sadly, we know from PACE that data will have to be graded by association with researcher, and those who cannot be trusted will have their data discarded. There is nothing they can do about this: if their name is on their shoddy work, it will go nowhere, and all the data they collected will be wasted.

There lies the danger of MEGA: not that it will pollute the big data, but that any good data it contains will be at risk of being discarded by everyone but Crawley and her associates. That is why patients should NOT let their data be associated with MEGA while Crawley is involved.

I think Steve has nailed it there, and as it seems unlikely that Prof Crawley will be willing to part company with MEGA, I still believe that we should sign the OMEGA (Opposing MEGA) petition to demonstrate our strength of feeling against the proposal as it stands. The original pro-MEGA petition has now been closed – perhaps because they realised that more people were taking their signatures off than were putting them on – but the OMEGA team are still promoting their counter petition. Here is their latest blog. Scroll to the end for the link to their petition or just click here.


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”