Discussion in 'PsychoSocial ME/CFS News' started by Dolphin, Jul 11, 2020.
I came across this today on Twitter:
My reading of this is that she seems stuck in the psychotheraputic paradigm despite experiencing 'chronic fatigue'. She can't even get beyond the trivialising name.
This reads (and it's her right to come from this POV) as all about the therapist and their making it right with this illness group. And since I'm not a therapist, I admit to a 'who cares' attitude (again just IMO).
I suppose that will seem like a harsh assessment. Psychiatry and psychology have done enough damage to this community that I at least consider it way too early for any sort of rapprochement.
That's not to say that there wasn't some useful observations on the treatment PwME have endured and some of the obstacles faced and so on. But . . .
People want to get better through medicine. While there may be some utility in speaking to psychologists about the harm done it should lead to de-emphisising psychological therapies and encouragement to work toward a biomedical solution.
Those poor therapists.
Yep. That really jarred for me.
It's an interesting piece but I was struck by the obvious - it is one thing to "know" about something and entirely another to "experience" it. As a pre teen youngster when a parent became rapidly disabled by a painful, chronic illness this seemed fairly obvious to me & I was just a child.
Doctors & therapists may know about a disease but that doesn't mean they understand how that affects the patient's life. That fact should remain in the forefront of their minds.
It's yet another thing to think you know about something that, in fact, very little is known about and that your knowledge is based on speculation & bias. Suspension of one's own critical thinking is laziness and an abdication of duty of care.
If you are genuinely interested in helping the patient you will listen to them and allow them to be equal partners in their own care rather than imposing a treatment package based on hot air.
I think the article starts well, making good points about the wrong direction her profession (psychology/psychotherapy) has taken with 'chronic fatigue'. And her description of her own experiences of dealing with benefits applications makes good points that would have been helpful in educating her fellow professionals in her talk.
But I can't get past her referring to her illness as 'chronic fatigue' and describing it as a 'fatiguing condition' without any mention of other symptoms, PEM or ME. It didn't read to me as though she was talking about ME at all. So either she has 'chronic fatigue' and doesn't have ME, and doesn't realise there is a difference, or she has been remiss in not informing her readers what she is actually talking about.
She keeps referring to herself as a health professional, but makes no attempt to educate her readers about ME. I can't help wondering whether she left her fellow 'professionals' as much in the dark in her talk.
The message I get is not good. It seems to be 'don't bother with CBT which is dodgy as PACE shows - go for CAT, which is personalised and collaborative so must be good and doesn't even need to be tested to know it works'.
Cognitive Analytic Therapy sounds a whole order of magnitude worse than CBT to me pretty much like the Lightning Process - not just dodgy science but complete mumbo jumbo.
I've just realised she linked 2 different articles.
The Cheshire CAT: Reflections on ‘Rabbit Holes’ is the one I commented on in my previous post. It didn't explain much about the CAT therapy.
The second one:
The therapist who fell down the rabbit hole of chronic illness
gives a link to a website explaining what Cognitive Analytic Therapy is:
How does CAT work?
I see no relevance of this to treating ME in this whatsoever. I think I'm going to reply to her on Twitter. When I can get the wording right.
I have now read the second article, and there is a lot to like it in - she gets it about the problems we face with disbelief, the bad CBT/GET research, the patient blaming etc, but still the same problem of calling it 'chronic fatigue, and no mention except very vaguely, of other symptoms.
I was thrown by this:
So a roomful of therapists found it unusual to 'hear from a patient'. What?
I thought they spent their entire lives 'hearing from patients'. Isn't that what therapy is about?
She did say they are a "special interest group".
and yet on that same site:
What's the difference between CAT and CBT?
I have not gone through all the linked material but I am unclear whether or not this talk of CAT is in the context of ME, or chronic fatigue, or actually neither. It seems to be thrown in sideways.
I am afraid that anyone who writes this would make me run a mile:
Together with your therapist, in the safety of the therapeutic relationship (what's that then!) you will gradually develop an understanding of the ways in which you have learned to cope with what has happened in your life. Often people who have been through abuse, neglect or trauma feel bad about themselves and this can affect self-confidence. The active part of CAT helps you to take part in the process of change in your own way.
Do many people live in therapists offices tho?
It's one thing coming up with new ways to think and to do things, to effectively change who you are and how you react, in a therapists office, but quite another once you come into contact real life, with other people.
It is 'likely' that any significant, let alone radical, change to the person projected will be met with resistance by others.
People do not exist in isolation, they have people they know, families, employers, etc. all of whom expect certain known things from them. Variation in this may cause 'friction'.
But then again I know nothing, I am still trying to decide if complete mumbo jumbo is better or worse than incomplete mumbo jumbo
Well that was an interesting experience of non-communication. Reminds me why I avoid Twitter most of the time.
No acknowledgement of my point about the use of the term 'chronic fatigue' being problematic, no response to my question about research evidence, no acknowledgement of my own experience that 'coping' therapy can and does cause harm.
Just a string of posts advertising her particular brand of therapy and how wonderful it is. No thanks, not for me. If that's an example of someone who claims to be expert in listening to others' lived experience, I give up.
Continues from the tweets linked above:
If you prod a duck, @Trish, you are likely to hear a quack.
Like those whoopee cushion things it is always entertaining to prove it is a whoopee cushion once, but that's enough.
ON the other hand the beauty of S4ME is that with people prodding this and that duck over the years the consistency of the quacking noise does become evident. The transparent absence of any rational argument seeps through like old fashioned golden syrup - to mix a metaphor or two.
These guys really are clueless, aren't they?
If you're struggling to manage the basics of keeping yourself fed and watered, you're struggling to cope with a health system that isn't designed with the chronically ill in mind and banging your head against the rock face of an unyielding benefits system, then this cr@p is simply an additional burden and a drain on resources you simply don't need and cannot afford.
What you really need is for those agencies you have to interact with to be adapted to make them fit for purpose. Failing that an easily accessible advocacy service that grasps the complex problems we face.
This CAT business is akin to asking a person who has just crawled out of the dessert what wine they would like and do they have a preference for a particular vintage when all they really need and want is water.
above thread gives info on her background
This. I don't trust any health professional who doesn't grasp it very quickly.
Why doesn't anyone in the health service understand that patient advocacy and support is the gap that needs plugging in chronic illness, not access to psychological services?
In some specialisms this function is delivered by nurses, backed up by consultants and GPs who can prescribe/refer/authorise if necessary. For instance, MS nurses can interact with occupational health teams, dieticians, mobility services, and local authority wardens; they can signpost to local services, e.g. for advice with benefits; they can offer an encouraging word when you're just going through a rough patch, rather than needing your unhelpful beliefs corrected.
Often, the only individual who actually develops a relationship with chronically ill people is their GP, and in some cases that might be the most appropriate health professional. In others, though, especially conditions where there's little available by way of treatment, it probably isn't; however, the fact that there's no available alternative probably contributes quite a lot to the strain on GP services.
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