How Many Times Must a Story Be Told…?

Sorry I’ve not been blogging recently. I put the blog to one side to concentrate on another project but I didn’t realise how long it would take. Needing to take breaks every five minutes to replenish my brain when I’m writing doesn’t make for speedy progress. Today, however, it has been May 12, ME Awareness Day, and I managed to share a link to Robert Saunders’ excellent ME-related version of Dylan’s ‘Blowing in the Wind’ on my (mainly non-ME specific) Facebook page. I read what I’d written to introduce the piece again just now and decided it was worth sharing it here too. If you’re involved in the ME world in some way, you’ve probably come across Robert’s splendid video already, but if not then do please take five minutes to listen – and maybe to share it with others.

Here (for a change) is the non-Facebook version of Robert’s introduction to the video.

Even if you think you know something about ME, some of the quotes used in the video may surprise you:

‘I split my clinical time between ME/CFS and HIV and I can tell you if I had to choose between the two illnesses, I’d rather have HIV.’ – Dr Nancy Klimas, Director, Institute of Neuro Immune Medicine, NSU.

‘People with ME are more disabled and have a lower quality of life than people with most other chronic illnesses including heart disease and multiple sclerosis.’

‘When the full details of the PACE Trial become known, it will be considered one of the biggest medical scandals if the 21st century.’ Carole Monaghan, UK MP

The PACE Trial spent £5m of UK taxpayers’ money and purported to illustrate the effectiveness of graded exercise therapy for ME. However, it was eventually discovered to be so full of flaws that it is now being taught in some university courses as an example of how not to do research. In spite of this, PACE is still highly influential worldwide, including here in the UK, its researchers being so embedded in the higher echelons of the medical establishment that mere facts seem to do nothing to damage their ‘credibility’ in the eyes of their peers.

Time and again, the faults and subterfuge which lie behind PACE have been laid bare, first by patients – many working from their sick beds – and more recently by commentators such as Dr David Tuller who have taken the trouble to look at the evidence and understand that the trial, and the biopsychosocial theory which underlies it, need to be exposed as the sham that they are. Time and again, the argument is won, and the PACE researchers are left mumbling the same excuses which didn’t hold water the last time around, yet to change the consensus view of the illness appears to take decades rather than years. Press coverage is slowly improving but the PACE researchers have a powerful lobbying group, the Science Media Centre, on their side, and though journalists are often well meaning, their idea of balance seems to be to present both sides of the argument, irrespective of where the truth may lie. The equivalent of most articles about ME would be a feature on the shape of the planet which gave equal time and weight to the views of the Flat Earth Society.

As the song puts it:

How many times must an idea fail

Before it is seen to be flawed?

How many flaws can a Trial embrace

Before it is seen as a fraud?

So the process of exposing the truth is an arduous one and of course people with ME have little energy to spare. We fight the illness as best we can but it is a cruel truth that we also have to fight an intransigent medical establishment. Thank goodness for those few healthy people who are willing to help us.

The slow process of getting to the truth has to go on. Graded exercise as promoted by PACE is very dangerous for people with ME. It can – and does – leave patients bedbound, sometimes permanently so. Not only that but the persistent presence of the biopsychosocial lobby means that most research money, especially here in the UK, goes into various ‘rehabilitation’ research programs such as PACE rather than into much needed biomedical research.

Of the 14 million people worldwide estimated to have ME, about 25% are housebound or bedbound, many as a result of graded exercise programs. Many of these severely affected can’t tolerate light so they spend their lives in darkened rooms. Some are not even well enough to talk to those close to them, so they Iive lives of total isolation.

The photos in the video illustrate the worlds of a solitary room in which many such people must live. When the song talks of people screaming in the dark then, it is not exaggeration – except that in reality the scream will most likely be a silent one.

Thanks for listening and reading. Please help by sharing this. Thanks, too, to Robert Saunders and all involved in making this powerful video.

How many times must a story be told

Before you will see what is true?

Further reading:

David Tuller’s initial analysis of PACE. Just reading the summary gives you a good understanding of the scale of the ‘errors’ involved:

Out of the Blue: an account of what it can be like to go down with ME – and a few useful links (from the Spoonseeker blog):

 

Advertisements

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”

Making the Most of MEGA

In an earlier post, I published an email from Leeds ME Network to Sonya Chowdhury, CEO of Action for ME, expressing reservations about the presence of Profs White and Crawley on the team of the proposed MEGA biomedical research project. Here is the latest update from Leeds ME Network:

In response to our letter to Sonya Chowdhury, we have just received what appears to be a standard letter referring to the latest updates on the MEGA petition page at Change.org. Leeds ME Network have now responded in turn with the following email, slight variations of which will be sent to Ms Chowdhury; Stephen Holgate the CMRC Chair; Dr Charles Shepherd at ME Association; and ME Research UK. Our email follows:

We are grateful to the MEGA team for letting us know about the proposed CFS/ME biomedical research project. We believe it is very important that this study goes ahead but in view of some of the less than helpful research which has taken place in the past (in particular, of course, we are thinking of the PACE trial) we hope you will understand why we patients are keen to voice our concerns about the proposal.

1) The impression has been given that patients for the study group will all be drawn from the NHS Clinics. It seems clear that such a sample would be heavily biased towards less severely affected patients and that the sample would therefore be unrepresentative of the total patient population.

The reasons for this are as follows: Continue reading “Making the Most of MEGA”

A Broader Picture

The last draft post I wrote about the MEGA petition was superseded by events before I finished it, so I’ll try and crack on with this one before the same thing happens again. Of course ‘cracking on’ in ME terms is still kind of slow but I’ll see if I can break the tortoise barrier.

So, what’s happened recently?

Well, we’ve been told that Peter White is retiring from research and will only be an ‘advisor’ to MEGA from now on. This perspective appears to be endorsed by the latest list of MEGA personnel, which no longer includes him. I can only give a muted ‘hurrah’ to this one. Advice is dangerous stuff and you can still do a lot of damage with it. His PACE Trial is swiftly becoming a watchword for bad science (see here, here, and here). Is he really the sort of ME ‘expert’ that either we patients or the MEGA team want around to guide this latest project?

It really is astonishing that MEGA apparently do still want him around after all he has done, and that they clearly expect patients to put up with it. It seems to me that if a passing Martian was given a brief course in English and the full facts, then even he (or she) would swiftly understand why we don’t want Prof White anywhere near this project. Why do the MEGA team not get this?

People with ME have  been left on the scrapheap for decades. I myself have been ill for over thirty years. That’s over half my life. I have no children because of it. I lost my job. My life is very limited. Yet I am one of the relatively lucky ones. I can sit and tap at this keyboard – as long as I take plenty of rests to fend off the shoulder and eye pain and overall exhaustion. There are plenty of others who have to spend all their lives in bed, who can’t stand the light, who can’t even talk to their loved ones. We’ve all heard about Whitney Defoe whose birthday it recently was. He is not alone in his suffering. The vast majority of the severely ill are left to fend for themselves as best they can. Rarely do doctors come near them and they wouldn’t know what to do if they did.

And all this time, all these decades, so little research has been done, in large part because of the fairy story dreamed up by the PACE researchers and their associates: the fairy story that Continue reading “A Broader Picture”

Consultation – New NICE Guidelines on Multimorbidity

NICE have recently issued draft guidelines relating to multimorbidity, the not entirely appealing way in which doctors refer to the issue of patients having more than one health condition. There is a consultation period which still has a few days to run – the deadline is 12 May at 5pm. Comments from individuals as well as organisations are welcome, and I finally got round to sending in a few thoughts of my own (as a patient who has ME and also other conditions). I think it is good that NICE  have recognised the need to deal with this subject and they have focussed on the important issues of treatment interactions and coordination of care, but there are other issues they haven’t addressed. Much of what I have to say relates to matters I’ve raised in previous blogs, not least the tendency of doctors to assume that complex sets of symptoms are likely to be somatised/psychogenic. Here’s the feedback I submitted:

I don’t feel that the interaction of multiple health conditions has been given due weight in these guidelines. Obviously treatment interactions are important and it is good to see this issue thoroughly addressed in the guidelines. As a patient with multimorbidities, however, I find that little consideration is given to the interactions of the health conditions themselves and the associated effect on symptoms. I have spoken to other patients with multimorbidities and they have had the same experience. If the patient raises the subject of a symptom which is not normally associated with condition A, there is a tendency for the specialist consultant just to say ‘oh, that’s probably due to condition B’ and show no further interest. Meanwhile GPs are so overloaded that they tend to refer any complex issues back to the consultants, so they don’t get addressed. The problem of interpreting multiple symptoms also leads to delays in diagnosis and to misdiagnosis.

Another important and associated issue which is not addressed in these guidelines is the inclination of many doctors to leap to the conclusion that patients who have multiple symptoms (which do not fit the clinical picture of a specific pathology) must therefore have a somatised condition. I refer you to this NHS web page as an example of this unfortunate perspective which I fear is prevalent. As you will see, the advice given on this official NHS site is to keep such patients away from other doctors, to persuade them to dismiss any new symptoms as also somatic, and to develop a ‘therapeutic alliance’ with a close relative to enforce the doctor’s perspective. This imposition of the (often erroneous) doctor’s perspective upon the patient (often enlisting close relatives to overrule the patient) seems to be the antithesis of NICE’s declared intention (as described on Prof Haslam’s blog) of putting patients ‘in the driving seat’. It leads to misdiagnosis and/or late diagnosis of multi morbidities and also of rare diseases as described in the recent Rare Disease UK report. I believe that this issue needs to be urgently addressed, not least because it also leads to the misallocation of valuable mental health resources.

Beyond the Bounds of NICE

A long time ago, in the early years of my ME, a small study in The Lancet suggested that intramuscular magnesium injections could be beneficial for CFS (as they called it). I took a copy of the study to show my GP, the late Dr Paul Moxon here in Leeds, UK, who read it and started injecting his ME patients in line with the study protocol. In a matter of a few weeks, I went from being largely housebound to up and about again. I made this transition gradually but it is worth recording, by the by, that any deconditioning which might have occurred while I was being looked after by my parents for several years did not present any significant impediment to my remobilisation. When my body got what it needed, I was able to function again. I was by no means cured but the improvement was substantial.

Since then, my ME has fluctuated and at one time I became largely housebound again. On that occasion, magnesium sulphate failed to pull me round – and I understand that subsequent trials of magnesium injections failed to replicate the success of that first study.

Nevertheless I am clear that magnesium injections helped me on that first occasion. I had several courses of six weekly injections. Each time, I began feeling better after the third week. The improvement would be sustained until a few weeks after the course but then tail off again. We eventually discovered that the best regime for me was an ongoing course of injections every three weeks. I kept this up for several years, stopping from time to time to see what would happen. Eventually I reached the stage Continue reading “Beyond the Bounds of NICE”