Open letter to Dr Peter Fisher, Liverpool University, about a research survey on emotional distress and CFS. 2019

Nice letter.

If psychologists learn about psychology during training, but the learning material is based on flawed science that doesn't reflect reality, is the end result that psychologists consistently misunderstand other humans while thinking they have special insight into the psyche?

 

That is a beautiful letter @Trish . Thank you for your effort.

Clear and on point.

I confess when I see this type of 'research' I am given to wonder at times how it is that the person has convinced themselves, in the interest of helping, that this will be of any benefit.

And so the divide. There on their side they believe it's a simple matter of adjusting our thoughts. And here we see that their thoughts on what keeps us ill do not align with our reality.

I wonder how much now has accumulated of this type of research (it seems mountains) and here we still are. And the numbers keep growing.

 

An excellent letter making very clear points.

 

This sums up the lack of insight among psychologists.

 

This makes it sound like in traditional medicine the patient is being lazy... Because they don't have to do anything to make their medication work? Because they don't perform surgery upon themselves?? Ffs. Such lazy passive patients, huh?
(Also, the person who wrote this has clearly never met a type 1 diabetic.)

 

That was a superb letter, @Trish and one I wish many who've initiated research projects into this illness would read. Thank you!

 

I sincerely admire the clarity of your letters @Trish . Thank you for the work you put into them.
I look forward to reading a response.

 

Ditto to what the others have written @Trish

Very clear, detailed, polite and informative.

 

Well done Trish & thank you. This letter is so good it could be used as a template for other letters/things.
Nice one

 

Excellent letter @Trish

 

Very good letter Trish. The response, be it good, bad, or non-existent, will be illuminating one way or the other.

 

Great letter - thank you. I am looking forward to the response.

 

This is a sensible reply but I don't see how any of this should apply to any particular disease. There is plenty of value in studying the emotional distress that comes from disability in general, especially as it would reveal how much of it is caused by health care systems that are shockingly oblivious of the lived reality of chronic illness.

But none of it is of any particular value to any specific disease. Whatever emotional distress experienced by pwME is quite generic, aside from being made much worse by disinformation and wilful ignorance, but then that would mean studying how a failed illness paradigm is responsible for much of it, not how sufferers of any particular disease experience it. It is shockingly similar to the early days of the AIDS crisis as well, where sick people were begging for help and met with contempt and indifference. There is much more to learn from the failures of health care in this regard than the reaction of yet another discriminated and vulnerable population.

I'd say it sounds a lot like the response from Cochrane about not reading anything into their arbitrary classification within the common mental disorders group. Sure, it sounds reasonable, but it's still not really credible. That it's not "causative" but merely "plays a role" is also the blatant lie from the BPS folks. "Just teaching the controversy" and all.

Here it may come from good intentions but... meh. Fool me once, shame on you. Fool me 29072936296329746 times, well... I expect better than the same old running in place in no particular direction and ultimately leading nowhere. Especially as this has been done plenty, it's just pointless.

 

My problem with regard to this type of research is:
Quote from text:

The type of therapy that is described (ie the other types that don't posit a model of illness) is only about changing our cognitions as a way of improving emotional well-being. In my opinion having been ill for decades now I can say with absolute certainty that what is needed is a change in the system and the way we are dealt with as an ill population.

Changing that would improve my emotional well-being immensely.

I don't need a therapist I need advocates.

I'm not saying there is no validity in having a look at what and how emotional well-being can be improved from a theraputic perspective it's just that from where I sit there is an awful lot of that around at least when compared to any conversation/research about the external factors contributing and needing to be changed for a better outcome for people suffering illness.

 

Distress and anxiety are warning signals. We need to act on them. Finding solutions for the issues that provoked a distress or anxiety response is the most powerful intervention. A treatment that restores functioning would fix a lot of distress and anxiety and frustration.

There doesn't seem anything unusual about distress and anxiety in ME/CFS, other than maybe the role of disbelief and marginalization occurring as consequence of psychogenic theories about the illness.

 

Thanks for doing this Trish.

I haven't looked at the details of this research, but to me the response from Wright is pretty worrrying.

That seems to imply some bizarre faith in the measures being used.

Oh great.

IMO it was probably a mistake for Trish's letter to have framed concern about the hardships of ME/CFS altering the way patients fill in questionnaires about their metacognitions in the way it did.

eg: "The whole survey seems to be built on the premise that emotional distress in ME/CFS is caused, and/or perpetuated, by patterns and control of thoughts and can be remedied by therapy. That is so very far from the truth."

To me, that indicates that the concern about the research is about what it will find rather than the quality of its design and the danger of it producing misleading results, which encourages the sort of dismissive response we saw from Wright. There was a lot of valuable info in there that should encourage people to realise how silly this sort of research is, but it could be interpreted as just a reflection of ME/CFS patients' bizarre opposition to understanding the psychosocial aspects of their illness.

Also, re: "Would you run the same survey with people with other long term disabling and debilitating physical diseases, like Multiple Sclerosis, or Parkinsons Disease?" There is so much rubbish psychological research on illnesses like these! It just tends to not do so much harm because patients with those conditions are in a very different social context.

Trish's letter provides a lot of good info on why the social context surrounding ME/CFS is different and can allow poor quality research to do more harm, but it's not presented as showing that researchers in this area have a particular responsibility to understand the social context in which they're working, so it seems Wright completely misses that point.

Sorry for only making criticisms of the letter after it was sent!

 

I agree. This.