Tory Majority Day 87: PACE Trial 2 – Why Wasn’t My Experience Of Attending An NHS CFSME Clinic Evaluated?

This is a follow up post from yesterdays about the PACE trial. 

It could end up being quite technical so I’ll keep it short for those of us with brain fog or who don’t come from a health care background or aren’t that interested in research full stop!

Outcome research is carried out in health care settings

In a nutshell it is a particular type of research that is carried out after a patient or patients receive treatment, in order to evaluate it to discover how effective it is.

Say, for instance, you are going to have an operation on your hand.

The operation is already supported by good clinical research – this is called clinical evidence – but it’s a new treatment and there’s an old treatment that is more routinely used.

In order to follow up whether the new operation works, researchers will do an outcome study.

They’ll design the outcome study to follow up patients that have had the operation at certain points after their surgery.

It will be done formally, with a proper research team. The research they collect will be fed back to inform the treatment providers, clinicians, patients and commissioners.

It says: “asking about whether treatment works or not, doesn’t stop when it’s rolled out in the NHS. We check further down the line too.”

Outcomes research can happen independently of any other sort of research.

It’s very good for capturing a wider view of how people have responded to treatments who did not belong to an original clinical trial like the people who were in the original PACE trial.

It widens the feedback.

Outcomes are also measured within research design

We know about this in, for instance, the research into Rituximab. 

Here the outcomes that were measured were set at certain points after the patients received Rituximab. It’s these outcomes that inform the researchers as to how effective the medical trial of Rituximab was.

The first type of outcome research can happen at any stage after a treatment programme has happened. It isn’t ‘bolted on’ to a piece of research like it is in the Rituximab trials or any other clinical trial of a drug or treatment.

Clinical trials will need outcomes measured because it’s that that helps people work out if something like a new drug works or not.

They finish when the clinical trial has finished.

Outcomes measured in research only measure the outcomes for the people involved in the trial, like the people in the PACE trial. 

Then there are patient evaluations…

Patient evaluations are collected from individuals or groups of people undergoing treatment or after they’ve finished a treatment.

You’ve probably had an evaluation form put into your hands at some stage of your life, maybe at your GP’s.  They are not as ‘formal’ as outcome research but they are important.

They are collected, then collated, then they are written up in reports and fed back into teams and services.

Clinical team Managers want to see them and pay attention to them. They provide a more informal record of things that might be coming up for patients.

Evaluations are a bit like market research.

Why are you bringing this up in context with the PACE trial? 

Well the PACE trial didn’t have to be the last time patients were asked questions by an NHS team about how effective CBT and GET is. It didn’t have to stop there, in other words.

An outcome study could have been carried out by any of the NHS clinical services across the UK who use a combination of CBT and GET in the treatment of CFSME patients.

If that was too time consuming and onerous, at the very least patients could be evaluated.

Those evaluations would have shown that there were problems with outcomes for MECFS patients undergoing GET and CBT, despite what the PACE Trial said.  

Here’s where this gets…personal…for want of a better word. 

I’ve attended an NHS CFSME service. I was a patient of theirs for a long time.

During that time I undertook various treatments, including Graded Exercise Therapy and a 8-week CFS Management Group ( CMG) run by the clinical team in the clinic.

I started the CMG with very positive intentions. I believed that the CMG would, as I’d been told by my case worker within the team, give me the tools to manage my health condition.

3 weeks into the CMG not only was I totally unconvinced of that, but the journey to the clinic and the 2.5 hours sitting in a stuffy room having to concentrate on the material being presented got to me. My symptoms started to get worse.

I missed my first session in week 4. I was really struggling but their message about attendance being crucial had hit home and I felt I had to struggle through as it was the one and only chance I had to ‘learn how to deal with ME.”

I went back for the next session, week 5, and I remember sitting there feeling the way I feel when I have post-exertional malaise.

My mind wasn’t clamping onto anything I was being told because it was being delivered in a way that simply didn’t allow for the fact that the people in the room suffer from brain fog.

I crashed for weeks and didn’t return. I wrote to the team about why I wasn’t returning and at that point I was told something by my friend with CFSME, CB. 

She told me that everyone in the CMG who completed all 8 sessions filled out an evaluation form.

She said that the team told her it was only the people at the CMG who attended all sessions and finished the CMG who were being evaluated. 

Now CB doesn’t come from the same professional background as I do, so she didn’t understand my reaction, which was to say: “What the f**k??”

I explained why. It’s important to evaluate ALL patients that have experienced a treatment, whether they complied with the treatment (that means attended, followed advice and finished the treatment programme) or not.

By excluding CFSME patients like me, who weren’t able to continue with the CMG because attending it made me iller, it automatically skews the results,  as any researcher will tell you.

Then I got a letter from my case worker. The letter said: “She was unable to continue to attend the CMG because she attributed attending the group to an increase in her symptoms.”

WTAF. I didn’t ‘attribute’ the increase in my symptoms to attending the CMG, the CMG was the only thing I was capable of doing at the time, I was so ill. My entire week was affected by going to it. There was no travel apart from public transport, I’d feel crap while I was there, of course, but afterwards I’d collapse for days.

Any post-exertional malaise and brain fog I felt and the subsequent crash I experienced after attending was down to one thing only – attending the C.M.G.

Why wasn’t I evaluated? 

At no point during the time I was a patient at the NHS CFSME clinic was I handed an evaluation form. Not even after I did Graded Exercise Therapy. To remind anyone reading, I stopped GET when I had an injury. I told the physiotherapist of this, and was asked why having an injury would stop me from doing exercise?

My experience of increasing symptoms through attending the CMT will never be formally captured, neither will the experiences of the other people who didn’t complete it either.

CB told me that only half of the CMG who started the group finished it. So in one cohort, that’s a 50% compliance rate. That’s also only 50% of the people who were evaluated. Accepting that some of that 50% won’t have returned a form, that’s not a high number of evaluations as a percentage of patients who started the CMG.

The interaction with the physiotherapist who suggested that I could continue exercising and didn’t ask the extent of my leg injury before giving me that advice, will also never be fed back.

I think this is blatant gerrymandering of patient evaluations in order to capture the opinions of those most capable of attending an 8 week CMG.

The evaluations will capture those that are likely to be higher functioning MECFS patients. This is called research bias.

When this data is fed back to the clinical managers, were the managers aware that people are being selected based on criteria that automatically show a bias?

If so, what does that say about the clinical managers’ interest in hearing views from the broader patient group or the team in hearing things that did not necessarily support their treatments?

Why isn’t everyone being evaluated? 

The answer? Because I suspect it was like those capable of continuing through the PACE trial. If you were able to comply with the treatment there, you were probably self-selected into a higher functioning ME CFS cohort. That also skews results and shows bias.

I think that if everyone who attended the CFSME service was evaluated for their opinion and experience, it would be like chopping down a tree at it’s roots. It would have toppled over.

Then the NHS would have to admit that the only treatment they can offer MECFS patients has serious concerns attached to it regarding the the research that underpinned it and therefore patient safety.

My post yesterday was opinionated about how much having MECFS has changed my previously positive view of the NHS for the worse. I’m not kidding. Even if I was well enough, I’d never return to working in the NHS, so unsupported I’d feel being a working health care professional with MECFS.

Not being evaluated because I didn’t complete the C.M.G. is one of the cuts in the tree trunk where my professional respect also used to be.

Good news …

In April this year, Healthwatch Trafford launched a patient survey  which asks people with CFS ME to say how they experience services in the area.

This is a VERY GOOD IDEA! If I was on Facebook right now I’d click ‘like.’

To every other NHS CFSME service – it’s time for you to do the same.


Then we’d have a much faster, honest and wide ranging feedback that would successfully underpin the criticisms of the PACE trial.

© Lindy 2015

Addendum: this post was edited to remove all the errors that having Brain Fog caused when it was first written. 5/11/15. 15:30pm.

9 thoughts on “Tory Majority Day 87: PACE Trial 2 – Why Wasn’t My Experience Of Attending An NHS CFSME Clinic Evaluated?

  1. Hi Lindy,
    Are you aware of the National Outcomes Database (NOD)? It collects (or collected) supposed ‘outcomes’ data from all specialist ME/CFS services in England and has been used in research.
    Most recent of which was published today in a comparison of Children to Adults with ME/CFS: BMJ:
    Now, I can no longer recall whether or not the NOD is still used and the questionnaires completed by those attending specialist clinics fed into this mechanism.
    I can also not recall the extent to which this data has been made available or whether or not it does indeed reveal the effectiveness of e.g. CBT and GET and Graded Activity Management, etc.
    I do remember it was used in the past in published research – but you’d have to search for it.
    I also know that Simon Collin (one of the authors of today’s research) is currently using the NOD or at least I think he is as part of his NIHR commissioned study:
    Now, that study could provide you with some answers but I suspect that while clinics use GET, CBT and GAM principles with patients, the application may differ between patient and between professional and clinic. So it might not be possible to compare or even obtain a worthwhile result; but I am sure he will publish something we can work with.
    I remember when I did my 10 week ME Management Course here in Cornwall. We completed several questionnaires, and I asked at the time (this was 2013) why they didn’t feed the results back to NOD. The answer was that BACME no longer required the data apparently.
    I always felt this was a shame, and like you, would have appreciated some idea of follow-up monitoring.
    I also don’t like this notion of ‘discharge’ from specialist provision, when ME/CFS is a continuing issue for all patients. Contact should be maintained I think.
    Anyway, I have gone on too long! Catch you later 🙂


    • Hi Russell,
      I was aware of the NOD but hadn’t taken that thought further in terms of ME or CFS so thanks for plugging the information gap following on from what I’ve written in this post.
      When I’ve got some brain power back I’ll look into this and write another post about what I find out – it seems to have hit a nerve and on Twitter too.
      Thanks again for your seemingly endless words of wisdom and information about the politics and background of ME and CFS healthcare,
      Lindy X
      P.S. having quickly done an internet search after posting this comment I’ve been stopped in my tracks by the thought that outcomes research is only as good as the methods used to capture the outcomes in the first place.

      Like fishing in the ocean, if you only throw a net into small areas where you are certain of getting a reliable catch, you’ll miss every other opportunity too.

      This applies to people who haven’t been able to sustain attendance at treatment clinics and the 25%, as well as those who for whatever reason can never access or engage with services or those who only ever see their GP. The ocean is big and wide when it comes to ME, which is why the Healthwatch initiative is so positive.

      But I’m still reading so my opinion may change! 😉


      • You opinion won’t change I fear Lindy. My own hasn’t. I do feel it a missed opportunity especially for BACME to really learn how they could improve things for PwME attending clinics and receiving home visits. It’s all quite sad. But BACME are a closed shop effectively and those patient rep’s who are members either don’t seem bothered or are ineffective. All that effort from patients completing q’nnaires etc. seems destined only to reinforce the ‘usefulness’ of these ‘treatments’ in – as you say – biased research. But we continue the fight regardless!


      • We do. It’s a cause of great concern that as a population of chronically fatigued, constantly ill people, with no treatment and no cure, we cannot expend time and energy on fighting the fight as populations of people with other long term health conditions can do.
        Thank goodness we have people who stick their heads above the parapet and use up what energy they have left to shout loud and hard about it. In an internet age, it makes it much easier to communicate about. It’s a real advantage….


  2. This is so important. Can you perhaps formulate this in terms of a question for your MP to ask in parliament? I wanna get the government accountable! Also – did you know that ME action net are asking for stories of this kind? Yours would be really powerful.


    • Hi Tanya,
      Although this whole subject has been sitting in my memory and thinking since it happened, apart from writing this post I hadn’t considered what more could be done. You are right. It needs to be passed on to be constructive.
      I’ll contact ME Action and also fill out the Healthwatch evaluation too.
      Thanks for reminding me that action is important, as well as communication. Lindy X 🙂


  3. Hi Lindy,

    Love the blog :-). Can I just point out that Healthwatch Trafford have also said that people not from their area can complete the questionnaire and they’ve offered to forward on those results to the appropriate area Healthwatch organisations. Which is excellent. So it’s definitely worth completing even if you don’t live there – who knows, it might make a difference to local ME services. Assuming that one exists in your area, of course!


    • Yes – I should have added that, thanks so much for pointing this out. It’s a survey that will be passed onto other services if there is one in your area.
      I’d also add that although this is a blog, and I’m being relatively informal in how I say things, it doesn’t add to our cause for respect if people write abusive or inflammatory feedback.
      As much as we might feel it inside, it’s important to be balanced – give them feedback they can publish and use without adding to the ‘mad ME people’ debate please……:-)
      Thank you. Lindy X 🙂


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

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