Tory Majority Day 85: What’s Also Wrong With The MECFS PACE Trial – The NHS Should Have Done The Critical Analysis So Tom Kindlon Didn’t Have To

I’ve said beforehand in this blog that I come from a varied professional background and that includes working in the UK NHS.

That was before I got MECFS, that is. I’m not now fit to work in any capacity, so rapacious is this illness for which in the UK there is only one treatment option within the National Health Service – CBT and GET.

Because I’m a warhorse of an ex-NHS employee, academic and an ex-clinician, the experience of having CFSME in Britain has been, to put it politely, an education.

I have gone from being a person who entirely supported and believed in the NHS and had the deepest respect for most clinicians that I worked alongside or met along the way, to a person totally jaded by a system that can allow such terrible treatment of ME CFS patients continue unquestioned.

Before having MECFS when there were problems I found that in the main, they were addressed and lessons were learned.

In the main clinicians treated patients with professionalism, the right amount of knowledge, clinical expertise and respect.

In the main patients were given the treatment that was in their best interests and aimed to treat their conditions at the right level.

No-one was mislead, patients were given the right information and treatment at the right times and the clinician’s approach towards them was caring, compassionate and mindful.

Not any more. The experience of having ME has changed my view completely.

Now I think the NHS is a closed shop and a system that can allow terrible neglect or abuse of patients by not being critical enough of the internal processes. This has allowed a totally wrong treatment programme to be initiated and then continued, despite all the evidence to the contrary.

I’ve been to many a party where once the: “what do you do for a living?” question has been asked and after I explained what that was, the next thing that happened was that I ended up defending people’s poor experiences of NHS treatment.

I usually took a balanced view and listened to them, after all, if you’ve been treated badly by a medical professional that is terrible and it deserves attention.

I learned from those conversations and took it back into my practice at work, often thinking about how I could make things better for anyone who experienced the same, or stopped someone going through the same thing entirely.

Usually I felt there experiences were a one-off and not true of the majority. I felt I was accurate in thinking that way, because I had seen and heard a lot about clinical interactions and outcomes in many different places.

But since I’ve been ill, I’ve had  more of a different type of education about how the NHS operates, specifically with MECFS patients.

Most of it has been questionable, again to be very polite. Well I am British and we are polite by nature, particularly when we’ve been professionally trained to be nice and polite, as NHS staff are trained to do.

I feel the entire experience of being treated within the NHS is encapsulated in the controversy around the PACE trial.

This clinical trial of treatment using CBT and GET has given UK CFSME patients the infamous treatment programme which was enshrined in NHS ‘law’ when it was initiated by the National Institute for Health and Care Excellence, or NICE in 2007.

I’m not going to rehash this but Cort Johnson has published this excellent post which kind of sets out the main points.

Here’s a link to the original academic paper, also published in 2007.

Now the reason why the PACE trial sticks in my thinking and I return to it over and over again, is not only that it is the reason why in the UK people with ME or CFS have had thoroughly questionable treatment, that’s bad enough of course, it’s because of what it represents about the National Health Service.

The people who authored the PACE trial and the people who treated me with MECFS could have been my colleagues

Yes. They could have been. I could have met them a thousand times over. In fact I’m not certain that I haven’t.

Of course this was before ME and then I would have approached them exactly as I approached any other researcher, clinician or academic – with professional respect and an assumption that they had the right level of clinical skills and academic knowledge to be able to do their jobs safely and professionally.

Before ME I also thought that NICE was an organisation built on academic rigour and the reflective, ethical capacity to seek out alternatives when evidence was presented that contradicted treatment norms. 

I feel the PACE trial has uncovered how NICE can’t be trusted with clinical research and critically analyze research findings before it ever gets to the point of initiating treatment guidance based on that research.

😦

The thing that stays with me about the PACE trial, is that @tomkindlon should NEVER have been forced to be the person to fight for the truth about it.

NICE and the original research authors and the academic journal it was originally published in,  should have done that level of analysis for us.

If the research is as flawed as many people believed, that should have stopped it in it’s tracks, but it didn’t. I can only surmise that the people involved did not adopt as much rigour in their analysis of the PACE trial as Tom Kindlon.

What does that say about the people who are working within the system that produces treatment recommendations for the NHS?

The horse has bolted.

As times move on with the generalized agreement about it’s flaws, the question is how will the NHS recover from it?

I’m still recovering from the experience I had of Graded Exercise Therapy.

We need the NICE guidelines suspended before any more MECFS patients can be harmed by the very thing that is supposed to help us.

Time out. Now!

© Lindy 2015

Addendum: the PACE trial findings were published in 2011. The link above refers to an earlier paper by the lead author, also into the efficacy of CBT with  patients with Chronic Fatigue Syndrome (not Myalgic Encephalomyelitis or ME). Apologies for this error – brain fog, and the fast writing that comes with irritation and annoyance are to blame 🙂

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3 thoughts on “Tory Majority Day 85: What’s Also Wrong With The MECFS PACE Trial – The NHS Should Have Done The Critical Analysis So Tom Kindlon Didn’t Have To

  1. This is the only treatment given to children and if the child does not get better, they first blam the mother and child then if no improvement they change the diagnosis!
    Bath are running a trial at the moment that is similar to the pace trial, run by one of the people who helped with the original PACE trial and is based on the “Lighting process ?” This was questioned with the ethics committee but objections were overruled as they said there was not enough research going in to Children with ME/CFS. I do wonder how much damage is being done to the very young, in my experience my son went from mild to housebound and no one can say if he will ever recover 😓

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    • That must be such a worry for you and so concerning. My experience of GET as an adult, was that they didn’t discuss prior to starting it, whether there were any adverse affects from the treatment. This conversation is necessary with any other treatment and was simply omitted. I don’t believe that without it, a patient gives informed consent.

      When I asked questions about adverse effects, they were answered. However only because I asked questions. It’s the clinician’s responsibility to inform the patient, not the other way around.

      I’m aware of the trial in Bath. I believe that some participants are being given CBT / GET and Lightning Process and others aren’t. I haven’t read anything about it for a while so perhaps someone can update me.

      I know a few people who’ve used the Lightning Process. Some say it was the method by which they got their lives back, some say that it was harmful. Those self-reported outcomes mirror many the outcomes self-reported by patients who have tried a combination of CBT and GET.

      The problem is that there is currently no method of selecting the patients for whom it will have the greatest chance of working, and the greatest chance of not working. This relates back to the problem with the diagnostic criteria for CFSME. Without that being tightened up and the biological research informing it, we’ll be left in a situation of ‘suck it and see’ which is the enormous problem with the current treatment.

      It is simply clinically unsafe to run a treatment programme for any illness or disease, mental or physical or a combination of the both, which cannot at the outset provide for outcome measures based on a more clearly defined set of patient criteria.

      The entire treatment programme and diagnostic criteria needs updating in order to make that happen.

      Oh, and I include the treatment of Rituximab in that comment as well. We don’t know enough about CFSME yet, to administer it safely to the current patient group.

      None of this, of course, makes a jot of difference to you. You are your son’s Mum and are worried enough for him. My heart goes out to you. X

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  2. Pingback: People with ME respond to PACE trial with their stories | WAMES (Working for ME in Wales)

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