Spreading the Word

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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”

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”

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”

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.

Getting Airborne

Steve Hawkins, who often comments here at the blog and quietly does a lot of useful activist stuff behind the scenes, left the following comment/proposal on the OMEGA petition site (and added it here in response to the previous post). I thought it was worthy of a wider audience so I’m reposting it here to kick off today’s blog:

‘It seems unfortunate that there has to be a petition of this kind against what, in the right hands, and with careful preparation of protocols in advance, would undoubtedly be a gathering of very useful data; and I feel uncomfortable that this will discourage some of the very able researchers and research teams who have been brought into the MEGA group but had no part in earlier ill advised research proposals; but it seems that something of this sort will have to be done, to ensure a complete new start, and clean break with the discredited ‘science’ of biopsychosocial egotists.

‘I apologise to the, well-meaning, I’m sure, Prof. Holgate, and those others who I fear have had to be reticent in criticising poor research, because of the binding conditions that were attached to membership of the Research Collaborative, under the direction of the partisan ‘Science Media Centre’, but the time really has come to return to both freedom of speech and information in this research field, after the gambit of crying ‘harassment’ after any honest questioning, has been so clearly shown up for what it was, in the courts.

‘I would advise that a new steering group be set up for a large and inclusive, data gathering and biomic sequencing and typing study with the major emphasis on the severely affected, who are the most likely to yield clear differences worthy of more intensive study. By all means collect data from a quota of less severely disabled/sick patients as well, but only to the number necessary to provide a control match for each of the seriously ill study subjects. A similar number of healthy controls will also be needed.

‘Thus the size and expense of the study should stem from the maximum number of seriously ill participants for statistical certainty… (plus controls). If that turns out to be a very big cost Continue reading “Getting Airborne”

More on MEGA

Following on from their original email and Professor Holgate’s response, Leeds ME Network have sent a further email to Prof Holgate of CMRC about concerns regarding the proposed MEGA project:

Many thanks for your swift response to my previous email regarding the MEGA study and for passing our concerns on to those who are preparing the bid for funding…

It is heartening to hear from your email that the inclusion of very severe patients is under discussion by the MEGA team. I notice, however, that you mention ‘financial limitations’ in this context. The reaction of other patients with whom I have shared this issue echoes my own: that severely affected patients should be the priority. People with ME/CFS in general are offered little in the way of treatment but most of the severely affected are abandoned entirely by doctors. They are left to lie in darkened rooms, often unable even to sit up in bed or converse with their loved ones, and without any prospect of medical intervention. I’m sure you know all this. Though I cannot claim to have taken a scientific sample of opinion, the overwhelming impression I get from patients is that if there are financial constraints regarding MEGA then these should apply to the overall number of samples taken rather than be focussed on the severely affected, who are the ones most in need of help. I am reminded of Prof Ron Davis’ observation that data from severely affected patients is the most important ‘because their biology would show the greatest differences compared with healthy controls’. It seems incongruous to be envisaging such an enormous study yet even at this stage, while the grant submission is still being prepared, to be talking about insufficient money for full inclusion in the study of those most in need of help.

A further issue regarding patient selection occurred to me while reading through the ‘questions and answers’ update on the MEGA petition website:

The update says: “The only way to do this is to recruit patients through NHS clinics throughout England.”

As I described in my previous email, taking patients from the clinics alone would produce a sample of patients biased towards the less severely affected. Continue reading “More on MEGA”