Psychological therapies - Discussion thread

Woolie said:
Not at all off-topic, @Mithriel.

I thought the general view was the opposite - that stress compromises the immune system, leaving one more vulnerable to infections. If we are responding to a major threat to our body or life, it would make sense to divert resources from the immune system to the central and autonomic nervous systems to gear up for that "fight or flight". A few people here have talked about how a large acute physical stressor, like moving house or taking a long haul flight, relieves their symptoms. I have experienced this myself following sleep loss related to long haul flights, and my condition is definitely immune-related (I've been diagnosed with an autoinflammatory disease).

I also worry about the word "stress", because it is such a general word. It can slide from grief and despair from the loss of a relationship or loved one, to the experience of being under intense performance pressure, to physical "stressors" such as contracting an infection, incurring an injury, undergoing surgery, etc. These things may challenge - or enhance - the immune system in the same way, but it is also very possible that they do so in very different - and possibly even opposite - ways.

It makes me particularly uncomfortable when people cite evidence from the effects of physical stressors (like surgery, shock therapy, injury, acute overexertion or infection) to argue for a role of psychological stress in illness. There's really no reason to think those two categories are anything the same.
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I don't go along with your "no reason....same" . How would you account for relief of symptoms by stressors mentioned? Don't the testimonies support a role? - maybe raised cortisol suppressing inflammation and/or creating a high, maybe endorphins.

There is a lot of support for your points on stressors differing and differences in immune response..
 
arewenearlythereyet said:
Recently though adrenalin-driven sharpness of mind is something that I have to avoid else I become more foggy due to the raised heart rate (which is ironic no?). I’ve had to learn to say “no” more and spend much more time managing expectations/negotiating deadlines whereas before I would just fit it in. If I got rid of ME tomorrow I would be back to it like a shot though ...makes you feel alive etc. I might take some learnings though.
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I found this one of the hardest lessons to learn.

I thought if I couldn't work harder or for longer hours then I just needed to "work smarter" and adjust my approach. Looking back I think there was some unconscious arrogance that I was in control.
 
Concentric_Spiral said:
Was wondering more about guiding therapists to be as understanding and supportive as possible with clients who have ME/CFS.
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I think people might have been caught in the semantics.

If they really want to understand, I would suggest spending some time here with a very open mind about perhaps being wrong about a lot.

The three factsheets are a good starting point for basic knowledge, but are not supposed to be guides for clinicians.
 
Utsikt said:
I think people might have been caught in the semantics.

If they really want to understand, I would suggest spending some time here with a very open mind about perhaps being wrong about a lot.

The three factsheets are a good starting point for basic knowledge, but are not supposed to be guides for clinicians.
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Yeah those documents are amazing! I could use something similar but geared for therapists. It's exhausting trying to explain the psychological landscape of having ME/CFS to a therapist. Not exactly the same as the physical side of things. E.g., what it's like having a syndrome that many people deny exists. What type of things can be helpful/unhelpful, how to make therapy more accessible, etc.
 
Concentric_Spiral said:
Yeah those documents are amazing! I could use something similar but geared for therapists. It's exhausting trying to explain the psychological landscape of having ME/CFS to a therapist. Not exactly the same as the physical side of things. E.g., what it's like having a syndrome that many people deny exists. What type of things can be helpful/unhelpful, how to make therapy more accessible, etc.
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Ah, for psychotherapists? There’s nothing available that I know of yet but @Joan Crawford (co-author of this open letter) has been working on guidelines for the british psychological society.
More info in this thread
https://www.s4me.info/threads/uk-br...ce-on-me-cfs-deadline-9th-october-2024.39995/
 
I get why people are scared of saying they don’t know. It can be hard accepting there are no answers. It can be difficult for your own ego to say it when people come to you for answers as the expert in a field. But it’s a necessary step on the path to finding those answers. Not knowing is how we gain knowledge and learn. And it feels like we need a lot more people in the world of ME/CFS to admit they don’t know, from those running clinics to those running charities and advocacy groups.
 
Concentric_Spiral said:
Yeah those documents are amazing! I could use something similar but geared for therapists. It's exhausting trying to explain the psychological landscape of having ME/CFS to a therapist. Not exactly the same as the physical side of things. E.g., what it's like having a syndrome that many people deny exists. What type of things can be helpful/unhelpful, how to make therapy more accessible, etc.
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That does sound exhausting and frustrating!

If they read the three factsheets they should probably be able to get some kind of understanding of accessibility, etc., and understand that any kind of psychosomatic approaches should be avoided.

Other than that, I would maybe try to look for a couple of written accounts of patient testimonies that (importantly) don’t include unfounded claims about pathology etc.

My therapist knew nothing about ME/CFS or LC, and said so, and she let me tell her what I needed. I had digital sessions and when I get worse she offered to let me split up the session and only charge me for the time spent over months (and not the whole hour for every started session). When she made suggestions for things to do she was clear that I had to say if it didn’t fit my circumstances.

I think most of that is just basic human decency and I’m not sure I would have stayed with her if she didn’t do those things. But I recognise that I might have gotten lucky and that shopping around might not be possible or easy.
 
Utsikt said:
That does sound exhausting and frustrating!

If they read the three factsheets they should probably be able to get some kind of understanding of accessibility, etc., and understand that any kind of psychosomatic approaches should be avoided.

Other than that, I would maybe try to look for a couple of written accounts of patient testimonies that (importantly) don’t include unfounded claims about pathology etc.

My therapist knew nothing about ME/CFS or LC, and said so, and she let me tell her what I needed. I had digital sessions and when I get worse she offered to let me split up the session and only charge me for the time spent over months (and not the whole hour for every started session). When she made suggestions for things to do she was clear that I had to say if it didn’t fit my circumstances.

I think most of that is just basic human decency and I’m not sure I would have stayed with her if she didn’t do those things. But I recognise that I might have gotten lucky and that shopping around might not be possible or easy.
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Thanks!
 
Concentric_Spiral said:
Yeah those documents are amazing! I could use something similar but geared for therapists. It's exhausting trying to explain the psychological landscape of having ME/CFS to a therapist. Not exactly the same as the physical side of things. E.g., what it's like having a syndrome that many people deny exists. What type of things can be helpful/unhelpful, how to make therapy more accessible, etc.
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Oh wow yes that is something that’s needed.
I imagine there’s similar scenarios (not necessarily health) say for example if you’re wrongly convicted, or wrongly identified as a bad person on social media or the press. There are loads of scenarios where the majority of society think you’re a liar/delusional and you aren’t, but can’t prove it.
 
Concentric_Spiral said:
It's exhausting trying to explain the psychological landscape of having ME/CFS to a therapist. Not exactly the same as the physical side of things. E.g., what it's like having a syndrome that many people deny exists. What type of things can be helpful/unhelpful, how to make therapy more accessible, etc.
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If a psychotherapist did not already have a good grasp of this I would wonder what use they could be as a therapist?
 
Concentric_Spiral said:
Most psychotherapists do not have a solid grasp on ME/CFS in my experience.
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But that was rather my point. If someone has not done the due diligence to familiarise themselves with problems like ME/CFS what reason is there to think they know anything of psychotherapeutic use? At least in the UK, anyone can call themself a psychotherapist, and they do.
 
Jonathan Edwards said:
But that was rather my point. If someone has not done the due diligence to familiarise themselves with problems like ME/CFS what reason is there to think they know anything of psychotherapeutic use? At least in the UK, anyone can call themself a psychotherapist, and they do.
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Some people may want psychotherapy to help with things unrelated to ME/CFS.
 
Jonathan Edwards said:
But that was rather my point. If someone has not done the due diligence to familiarise themselves with problems like ME/CFS what reason is there to think they know anything of psychotherapeutic use? At least in the UK, anyone can call themself a psychotherapist, and they do.
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Depends what you are seeing a psychotherapist for. Compassion and understanding don't require specific medical knowledge. In my opinion, the challenge goes beyond knowing the basic facts about ME/CFS. The conventional paradigm for therapy isn't always a good fit for ME/CFS. I don't have the energy to write more now, but to give you a sense of this issue, here is an excerpt from an article:

"Psychotherapeutic work with ME/CFS sufferers aims at recognizing and acknowledging (stress) limits. This contradicts the customary attitude of encouraging patients to extend and exceed their limits during treatment, which is widely applied across many psychotherapeutic methods. [...] This precaution should apply not only to physical activation as in the case of GET, but also to any other type of exertion, whether physical, psychological, or mental. In ME/CFS, each confronting element of psychotherapy is therefore potentially risky.

Moreover, systematically questioning a patient’s perceptions of stress limits in terms of so-called dysfunctional cognitions (a concept often invoked during CBT) or of unconscious motives (as usually focused in psychodynamic therapies) is contraindicated in ME/CFS. That kind of approach encourages individuals to distrust their perceptions of stress limits, in direct contradiction to the principle of paying close attention to, and respecting, such limits as encapsulated by the notion of pacing." https://pmc.ncbi.nlm.nih.gov/articles/PMC10145115/#sec4-medicina-59-00719
 
hotblack said:
Some people may want psychotherapy to help with things unrelated to ME/CFS.
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Yes, but surely a psychotherapist with a braod enough outlook to be able to make any sensible assessment of someone's needs would be aware of ME/CFS as a disease that poses problems because others do not believe in it. I would have thought anyone who socialises a bit would be aware of that.
 
Jonathan Edwards said:
Yes, but surely a psychotherapist with a braod enough outlook to be able to make any sensible assessment of someone's needs would be aware of ME/CFS as a disease that poses problems because others do not believe in it. I would have thought anyone who socialises a bit would be aware of that.
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But we know that’s not the case with huge swathes of people. To use your earlier point, is no medical doctor of any use unless they have done their due diligence to familiarise themselves with ME/CFS? Okay… Actually…

Do we give up and say ‘well anyone can call themselves a doctor’ or do we try to educate them?
 
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