Esther Crawley – spoonseekerdotcom

Swings amongst the Roundabouts

Anyone reading through the numerous posts on this site could get the impression that nothing encouraging ever happens in the world of ME. Well it often seems that way, but good things do occasionally come along and I have to admit, if I’m honest, that these posts are more likely to be bearers of bad news than good because I’m more likely to pick up my tablet and write about something which has annoyed me.

Having moaned so much about journalists last time, however, it seems only fair to redress the balance by reporting when one of them has done a good job. So congratulations to Tom Whipple of The Times for a well informed article on the review of the NICE Guidelines. Thanks also to the ME Association for providing a way round the paywall – and to Dr Keith Geraghty who appears to have been instrumental in setting this article up. I really hope we can look forward to further reliable dispatches from Tom in the future. There’s a lot of opportunity in the ME field for any journalists who are willing to consider taking the trouble to get to the truth.

And speaking of NICE, the decision to review the guidelines after all came as another piece of good news. Bearing in mind the information available, the revised advice in the USA, the petition with 15,000 signatures, and the Early Day Motion in parliament, you might have been forgiven for anticipating a change of mind at NICE, but we’ve got so used to having our sensible arguments ignored, that it came as quite a shock when it actually happened.

And now yesterday, another good media item on M.E., this time a special phone in on BBC Radio 4’s ‘You and Yours’. Congratulations to Dr Charles Shepherd and to all the callers who did an excellent job. Prof Crawley was less impressive but more of that in a moment. I know that a great many patients contacted the programme so well done to you lot too. Here, for what it’s worth is my own contribution, dashed off yesterday afternoon. Yes, I’m moaning again…

Dear You and Yours – Thank you for your programme on ME/CFS which was much better informed than most items concerning the condition which appear in the media. I’m sure that many patients will have welcomed it. However, there are a few things I would like to bring to your attention:

1) There are two types of CBT used for ME/CFS. The first is simply to help patients come to terms with having the condition, dealing with feelings etc. This is the same as would be used for any other physical condition, such as MS or cancer. This can be very helpful and most ME patients do not have a problem with this. However, the type of CBT most frequently used for the condition is very different. It is used to try to convince patients that there is nothing physically wrong with them, that they are simply being kept ill due to deconditioning and all they have to do is to exercise more to get better. This flies in the face of the physical evidence and when used in conjunction with graded exercise therapy can make patients a lot worse. Many patients have become permanently severely disabled due to this approach. (This is the type of CBT that was used in the infamous PACE Trial and is still used in many NHS clinics. So when its proponents say that there isn’t a problem because CBT is used for other physical conditions they are, I’m afraid, intending to deliberately mislead.)

2) No mention was made on the programme of the severely affected, who comprise about 25% of patients with ME/CFS. The vast majority of these are permanently housebound or bedbound. Many are unable to even sit up in bed, tolerate light, or converse with their loved ones. Most of these receive no medical attention whatsoever as GPs often refuse to visit them. Most doctors do not believe that people ME/CFS can become so severely ill, and wouldn’t know what to do about it even if they did.

3) The first forty minutes of the programme were excellent so it was disappointing that you gave five minutes at the end to Prof Crawley with no one to challenge her. She is one of a small group of UK doctors who have built a career on poor quality, misleading research which has only led to confusion in the field. Her latest paper on the lightning process is an example of this but there have been many others. Studies such as these (and the PACE trial itself) are misleading for numerous reasons but one of the problems is that many of the patients selected do not have ME/CFS at all but fatigue due to other conditions such as depression. Many of these will respond well to graded exercise or possibly the lightning process, ‘treatments’ which are harmful to people who really have ME/CFS. This would not be a problem if efforts were made to clearly distinguish between the different types of patient but Prof Crawley persistently fails to do this, conflating patients with ME, CFS and generic fatigue. These days she is frequently in the media, much to the dismay of many patients. We have noticed that there is never anyone to challenge her point of view. Why not? It would have been interesting to listen to Dr Shepherd in conversation with her, for instance. I hope that if you cover the subject again, Prof Crawley will not be allowed to go unchallenged.

Notwithstanding the above, your programme was like a beacon of light amid a sea of misinformation about our condition. Thank you for producing it.

Hmm, ‘beacon of light’ may have been a bit over-enthusiastic but it’s best to give encouragement where it’s due. Lets hope to see further outbreaks of truth in the UK media soon…

P.S. Yes, I know I’ve conflated ME and CFS myself. Sorry. But it seemed best to write using the same terminology they used on the programme. Advance notices for ‘You and Yours’ spoke of ‘chronic fatigue’ but it seems that someone put them right on that one. By the time of the actual programme they were saying ‘ME/CFS’. At least that’s some progress.

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?

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.

Natalie Boulton – MEGA PAG

Hello – I’m back from the MEGA PAG. It didn’t go too well. I’m afraid.

Yes, I know, you told me so…

I’m still trying to work out how to report what happened without falling foul of the confidentiality clause. In the meantime, here’s an account from Natalie Boulton, co-producer of the Voices From The Shadows film, who left at the same time as me. This also appears on Natalie’s Voices From The Shadows Facebook page:

Three members of the MEGA patient advisory group resigned last Friday 17th March – myself Natalie Boulton, ‘Spoonseeker’ and Jim Wilson. ‘Spoonseeker’ writes a well informed and thoughtful blog, I made the collaborative book ‘Lost Voices from a Hidden Illness’ and co-produced/directed the film ‘Voices from the Shadows’; an advocate for ME patients like my daughter and her friends. Jim is a former research physicist and computer scientist. He has a wide ranging professional experience in senior business management and of delivering projects in both direct management and board level oversight roles, which involved partnership in working across organisations and cultures. He is also a trustee or chair of several charities. The professional experience he brought to the PAG has been invaluable. Both he and I are carers for daughters ill with ME. Spoonseeker is himself a patient and also a carer for his wife who has ME. A very active member of a ME support group, he has had a long involvement with a wide range of patients and their experiences. We all took our support for, and participation in MEGA, very seriously. We expended an enormous amount of effort and time on it; committed to applying our varied expertise to the project in a constructive way. I think the other two will soon make their reasons for resigning public, in so far as they are permitted to by a confidentiality agreement. Keep an eye on Spoonseeker’s blog for their accounts. I restrict this account to my personal impressions and publicly available material.

I applied to join the MEGA PAG believing that the public specification for the patient advisory group was a serious commitment to ME patients and to PAG members – at least until a more comprehensive Terms of Reference was agreed with the PAG. I also believed that the information given to Forward ME by Prof Holgate, to allay concerns expressed by the Countess of Mar and ME charities about MEGA, could be depended on.

I now find, almost three months since the PAG was formed, that both this public commitment and Prof Holgate’s answers have turned out to be misleading. Furthermore, no terms of reference have been agreed, to enable the PAG to operate effectively, despite this being a priority, and the minutes from the only meeting held while I was a PAG member ( last December) have still not been confirmed or made public.

I am, therefore, concerned that patients and ME charity representatives have been misled. In my view, over the last three months, the PAG has not been permitted to carry out the functions publicly ascribed to it. As an advocate for severely ill ME patients this puts me in a difficult position. Members of the PAG have been working and studying incredibly hard, both individually and collectively, in order to be in the best and most informed position to assist the MEGA team who, as a group, have very little knowledge of ME/CFS. I believe we are all desperate for good quality, relevant research to be done on ME and ME/CFS, so I have found it intensely frustrating to find our efforts to engage thwarted at every step. I have not felt that the PI representing the MEGA researchers has a genuine wish for a meaningful engagement with the PAG, nor for the collaborative relationship many PAG members hoped for and have been working towards. Now, sadly, my impression is that the PAG was hastily appointed at the last minute as a cynical attempt to try to make bioresource bids look more appealing to funders and to reassure patients.

I have not found an honest and open environment for discussion between PAG and PI. At the only official PAG meeting before I resigned, it became clear that critical design issues for the MEGA project had already been decided upon and were non-negotiable: no meaningful discussion of these issues would be permitted. All further research by MEGA researchers, whether a broad ranging Genome Wide Association Study or more in-depth research, will depend on the samples collected for the MEGA biobank, so the selection and identification of patients is crucial, as Prof Holgate and others including Prof Davey Smith have pointed out.

At her recent inaugural lecture, the PI made clear her understanding of ME/CFS in children as being a very common condition, responding very positively to the behavioural management regimes found to be so flawed in adults. She also expressed grateful thanks for the assistance that she has received from Profs. Peter White and George Davey Smith over the last 10 years, with helping her win research funding. Peter White is the psychiatrist who led the PACE Trial. George Davey Smith is an excellent researcher, but says he knows nothing about ME/CFS, even after 10 years of being associated with CFS research as Bristol University. As a PAG member I have seen no evidence that the MEGA biobank PI is willing to allow those who have lived with and developed a more realistic understanding of the severe illness known as ME, to engage in meaningful discussion about the selection of patients and to listen to our concerns about the potential danger of particular groups being under-represented in the biobank and even in a GWAS.

ME has a long history of definitions and criteria being used in a very ‘creative’ manner.
I decided a couple of weeks ago that, as an advocate for those with severe and long lasting ME, I could no longer remain a PAG member in a project whose value to ME patients:
1. relies entirely on how a few significant terms – such as PEM – or ME/CFS – will be defined at some future date
2. where crucial decisions, which will impact on future options, were made without any in-depth discussion being permitted
3. where no working relationship or discussion has been allowed between the PAG and MEGA researchers.

Since impending resignations were known about, there seems to have been a frantic attempt to placate criticism from the PAG, but this does not restore my confidence in the overall MEGA biobank project.

There has been a history of legitimate patient concerns being dismissed as harassment and persecution, even when these concerns are raised at terrible cost to patients own health. I hope that researchers, patients, carers and ME charities will recognise the legitimacy of the serious concerns raised by the resigning PAG members, rather than dismissing them and relegating them to the ’persecution of brave researchers by nasty patients’ narrative.

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”

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”

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”

Response from Dr Hammond plus new Research

Following on from the previous post about Prof Esther Crawley’s broadcast on BBC Radio Bristol, Dr Phil Hammond has left a response to my letter and I in turn – along with some other correspondents – have replied.

Meanwhile, there has been excellent news from the ME Association who have launched an appeal for a metabolomics study using samples from the existing British biobank, which will include the severely affected. Psychiatrists will not be among the researchers…

You can find more information and details of how to donate here.

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”

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