Diary Day 100: Reading Postive Press About The MECFS PACE Trial Upsets Me Again

I’ve been focussing my attention on other things recently – well, focussing what attention I have towards other things recently – I should say.

Occasionally though, something has popped up in my timeline through stories that are circulating in the news, or via the ME charities and they pull my attention back towards CFSME and I start thinking about writing a new blog post on here again.

Over the last few days I’ve stopped to read the very good news from ActionforME that they are supporting the release of data gathered during the PACE trial from (I believe) Queen Mary University London. Good. About time.

It was incongruous that they hadn’t come out in support of that movement (I mean movement as in a groundswell movement) before now. This should be a step forward in helping to:

a) highlight the need for a release of all the research data held for the PACE trial

b) achieve consensus across the ME community about the need for transparency in this clinical trial

c) bring more pressure to bear on the researchers and authors to explain their research findings by bringing them back to the data – not the controversy – that was collected throughout the PACE trial

d) take the narrative away from “mad ME patients wailing about the treatment” to “official concerns from charities also”

e) build a tipping point from all sectors that pushes for publication of these results.

Then today I read an article, I forget where, from someone who has fully recovered from ME using a combination of CBT and GET. My heart sank like a stone and I started to feel tearful and upset.

This is a pretty normal reaction. I get it every time there’s a widely circulated newspaper article about a magical cure for MECFS.

To be clear. That anyone has improved in their symptoms and functioning is really, really good and I’m pleased for that person.

The problem is that stories like that reinforce the impression that the PACE trial was correct in their findings that CBT /GET can permanently improve functioning for all CFSME patients.

That, in turn, swings perceptions against the movement towards transparency in publication of the trial data as it says: “see, this person used the NHS treatment and THEY got better” or “CBT/GET 1, detractors nil.”

The scores on the doors are also not helped by people who have mild ME ‘coming out’ about how they have it but ‘you’d never know until you saw me at home’ or people like Claire Francis, sailor, saying that she had it, but she’s over it now, or people with ME who turn up on TV shows sitting next to Sonia Chowdhury when she’s being interviewed about ME looking really well and sounding well too.

Those patients are not most ME patients. They don’t represent me, for instance. They don’t represent my friend CB either.

If you can work and you have ME you are a high functioning ME patient. If you can make it to a television show, ditto. If you can sail and have a good physical life with minimal pay back and have ME, ditto times 2.

You aren’t me.

To get even more controversial, I don’t think you are in remission from ME when your life has to wrap around it to such a large extent that you:

can’t work full time

can’t hold down a relationship

can’t remain well for longer than a day before feeling bad again

can’t have hobbies

can’t do much in one day without having to rest for the remainder of it

can’t study because brain fog is such a disabling factor

can’t socialise that much

can’t go out in the evenings because by then you are flat out exhausted

can’t plan ahead because you are never certain how you’ll be on any one day

can’t do anything to make your symptoms better except live in a bubble with everything removed that makes your symptoms decline. i.e.

YOU can’t live life normally!

THAT’S ME, by the way. 

I’ve tried graded exercise therapy and it got to a point where it worked, but past that my symptoms declined so much that I had to discontinue.

I am in counselling to help me work through how to adapt to my new lack-of-health, something CBT would do also.

Neither of these things have improved my symptoms and brought about a remission.

What upsets me so, so much about news reports that weigh the debate towards “CBT/GET works and the PACE trial points the way” is that it doesn’t work for everyone.

While this debate is still raging, attention is being drawn away from the real work that needs to be done which wasn’t covered by the PACE trial.

The real work that needs to be done is:

  1. Identify what is going on biologically with CFS and ME, not psychologically
  2. Use this information to screen potential and existing patients to diagnose them more accurately and group them into sub groups accordingly
  3. Use this information to start drug trials that are targeted at the sub-groups of ME or CFS patients
  4. After that, carry out much, much more biological research into why certain patients respond to CBT/GET and certain patients don’t
  5. Feedback this data into the diagnostic criteria and treatment regimes
  6. Change the culture in the NHS to be much more critical of the research that underpins evidence based practice and respond much more quickly to concerns or new research
  7. STOP once and for all the ‘either-or’ narrative that seems to have hijacked the entire recent debate about this illness and disease. If CBT/GET works for some people, well that’s good, but everyone must formally state that it does not work for all, charities included.
  8. The press need to access more people for whom there are not positive stories about having CFS or ME or for whom they tried the treatment and it didn’t work!!! I mean, read this blog!! I’m one of these!!!!!!
  9. Sort out this bloody diagnostic mess brought about by lack of research base informing the diagnostic criteria. Isn’t it about time yet? Yes it is!! CFS isn’t ME which isn’t CFS. Post-viral-fatigue-syndrome can last for a long time after an infection, and produce similar symptoms but is short-acting. If people recover within a year, I think they’ve had PVFS, not CFS and not ME…

Finally 

There is clear research evidence that suggests that the first 3 years of having this illness has a different immunological fingerprint than after the first 3 years.

When will someone put forward a research proposal looking at the length of time someone has ME, looking at those biological fingerprints in their blood and cross reference that to efficacy of treatment modalities?

Only then will we really know whether, for instance, CBT / GET works for patients who have a certain immunological/biological fingerprint and are less than, or more than 3 years since diagnosis, for example.

Perhaps CBT/GET works only when that biological fingerprint has abated enough to allow the body to respond to those treatments?

With this debate continuing it’s simply not making things better, it really isn’t. It’s upsetting and patronising. If it worked, I’d do it.

My cure isn’t yours.

© Lindy 2016

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