Swings amongst the Roundabouts

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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?

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,
3.to 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.

Looking at the Evidence

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

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

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

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

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

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

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

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

Hillsborough Law – Shifting the Balance in Favour of Truth

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

Spotlight on GETSET Julie

Do GET Yourself

GETSET, the latest paper on graded exercise therapy by lead PACE investigator Peter White (et al), provides an excellent opportunity to probe into the nitty gritty of such a trial. The study required patients to administer their own GET so some of the details previously hidden by smoke and mirrors are laid bare in the explanatory booklet which served as the patients’ bible during the study.

Here are some quotes from the booklet (in blue) followed by my comments:

A GET programme will help you gradually improve your ability to undertake some of the physical activities that you have been unable to do since becoming unwell.’

The word ‘will’ seems optimistic here if we’re talking about ME. Though what illness are we talking about, I wonder? This guide refers to CFS/ME but the GETSET paper only mentions CFS. They need to be more specific about what they’re talking about.

However, a self-help guide such as this has not been officially tested so it is important that you check first with your GP or hospital specialist that a GET schedule is suitable for you. You should also continue to consult them regularly while undertaking your GET programme.’

Maybe they’re already wondering if that optimism of theirs was misplaced. This translates as ‘This therapy is totally, totally safe but make sure you tell some other doctors what you’re doing so we can blame it on them if it goes wrong.”

There may be a number of reasons why exercise did not work for you before. You may have started at too high a level of physical exercise, or increased the amount you did too quickly. You may have used an exercise that was too challenging for you now such as jogging, which you could do perfectly well before you became ill with CFS/ME.’

They seem to have forgotten the alternative explanation that it didn’t work because you may have ongoing pathology in your body – as illustrated by some of the biomedical research that got done with the small amount of money that wasn’t all wasted on nonsense like this.

‘The 2007 National Institute for Clinical Excellence (NICE) guidelines for the management of CFS/ME recommend GET as one of the most effective therapies for CFS/ME.’

But they’ve read a virology blog and may be having second thoughts. (Interesting that there’s no mention of the PACE trial here, by the way.)

‘After a period of illness most people find that they take some time to recover. During this recovery period we tend to avoid physical activity and rest more than usual. When we do less each day our body loses fitness and strength in a physical process called deconditioning. The result of deconditioning is that we become physically tired much sooner…’

‘The inability to function as before leads to frustration and an eventual lack of motivation for any physical activity. This starts a vicious cycle of avoiding activity and increased fatigue which then results in further deconditioning. The aim of GET is to break this cycle.’

That’s clear enough. They’re saying that CFS/ME is caused by deconditioning. This is a form of what they call ‘false ideation’. We think we’re ill but we’re not. So why does it say in the GETSET paper that ‘the relative efficacy of a behavioural intervention does not imply that chronic fatigue syndrome is caused by psychological factors’? This programme of treatment seems to be based on the supposition that it is caused by psychological factors. There seems to be incongruity at the very heart of the study. (Of course, there is plenty of evidence that ME is caused by some form of ongoing pathology rather than deconditioning. Is that why they’re fudging the issue?)

‘Regular physical activity is known to have considerable benefits: it improves the efficiency of the heart, lungs and circulation and generally helps the body to deal better with the demands of daily life.’

Unless of course some of the patients have ME. (I wonder if they’ve checked on that yet?)

‘It will be easier to keep exercising on a regular basis if you enjoy what you are doing. It could be an aerobic exercise such as walking, cycling, swimming; a home or gym based exercise programme; or just increasing things you do at home such as housework (e.g. vacuuming), gardening, or climbing stairs.’

I thought I read somewhere that research had shown aerobic exercise wasn’t good for people with ME. Or was that because they hadn’t chosen a type they enjoyed enough? If only I’d swum with dolphins instead of the vacuuming…

‘Your muscles can feel heavy after exercise, and you may feel physically tired. With CFS/ ME these feelings of physical tiredness can be more intense, but they will also help you sleep.’

Yes, as any person with ME will tell you, intense pain and exhaustion are just the thing for a good night’s sleep.

‘If you do have a setback, do not despair. They are relatively common in people with CFS/ME and you need to develop a plan to deal with them.’

You may find the longer this goes on, the more ‘relatively common’ your setbacks become. A good plan to deal with them may be to leave the trial.

‘If your setback is not CFS/ME related, in other words you have picked up an infection, you should reduce the amount of exercise you do, or even stop altogether for a short while, before returning to your GET programme. If your setback is CFS/ME related then you should try and continue exercising at your current level to the best of your ability.’

So if you get a cold, that could be serious so you need to stop for a while, but if it’s just ME, there’s no need to worry: just press on…

‘It is often incorrectly assumed that an increase in symptoms equals harm. It doesn’t.’

Glad we cleared that one up. This may explain why no harms were reported on the trial. Do they concede there’s a harm if somebody actually dies, I wonder?

‘If you continue at the exercise level you are on now you may well find that you feel no worse, and after a short while you may actually feel better. Remember that although you may not feel like exercising during a CFS/ME related setback, by resting too much you can quickly lose the physical gains that you have made. Setbacks are a normal part of recovery and so it is important to remain as positive as possible. As you get stronger you will find that you have fewer setbacks and they are less severe and last a shorter time.’

Somewhere over the rainbow…

In the next post, I’ll move on to look at the focal figure of the GETSET Guide, Julie, who has already become an internet phenomenon…