worldbackwards
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It's a wonder they bother doing the trials really. I could write that abstract up now.I guess we'll soon find out.
https://www.researchgate.net/public...or_people_with_progressive_multiple_sclerosis
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It's a wonder they bother doing the trials really. I could write that abstract up now.I guess we'll soon find out.
https://www.researchgate.net/public...or_people_with_progressive_multiple_sclerosis
My own contribution:
Gosh, I sounded cranky!
Let's leave solving of ME to actual scientists - the immunologists, virologists, neurologists etc... (Sorry, am rubbish at replying to quotes properly, my poor head is not up to at moment, am trying to cook, but so angry!)
If I had been better at self management and managing my disease - rather than denying it at times, I would at the moment be able to consider continuing to learn to drive, and perhaps take some part-time work, rather than being mostly bedbound.
Psych research has a vital role in this.
It is unlikely a cure will come in the next 5 years.
We need better disease management too.
I also disagree with this.I disagree.
Poor activity management of things I am in control of has also played a part.
None of this is directly related to the cause of the disease, and help researching better therapies and self-managment strategies would be solidly in the psych arena.
If I had been better at self management and managing my disease - rather than denying it at times, I would at the moment be able to consider continuing to learn to drive, and perhaps take some part-time work, rather than being mostly bedbound.
Psych research has a vital role in this.
It is unlikely a cure will come in the next 5 years.
We need better disease management too.
It's called patients education, and you don't need psychiatry to teach patients how to manage activity when you have ME, certainly not the kind that are "taking care" of us right now.
If you have difficulty to accept that you are ill, then you may need psychological support but that's another thing.
And what research is that patient education to be based off?
'Knowing what you can do' - great.
Should every single person have to explore the limits of this, and risk crashes - is there a coherent activity pattern that leads to long-term issues, ...
It is very clear that symptoms differ significantly between people, and signs of 'doing too much' do as well.
This is precisely not the sort of research that should be done a person at a time, or with self-selected reporting.
Pervasive Self-Denial Syndrome?These people just don't know when they are beaten. There must be a psychiatric label for that....just can't think of it right now.
Absolutely. Feels more akin to middle ages sorcery than modern medicine.And if your theory is about damaging false beliefs it might be a good idea to remove the beam from your own eye....
The same. Cancer fatigue as well. "Common sense" apparently
Conclusion
This study explored the subjective experience of fatigue after cancer using the SRM. CrF (cancer-related fatigue) should be approached as a complex psychosocial issue and considered from the patient perspective to facilitate better understanding and management of symptoms. The SRM is an applicable framework for identifying modifiable factors that could lead to improved coping with CrF in post-treatment cancer survivors.
Except you're describing biomedical issues and research. For example, many find it helpful to watch their heart rate and pay close attention to physical symptoms such as pain, getting short of breath, etc. Crashing is a physiological phenomenon, not a cognitive or behavioral one.Should every single person have to explore the limits of this, and risk crashes - is there a coherent activity pattern that leads to long-term issues, ...
It is very clear that symptoms differ significantly between people, and signs of 'doing too much' do as well.
None of this is directly related to the cause of the disease, and help researching better therapies and self-managment strategies would be solidly in the psych arena.
Except you're describing biomedical issues and research. For example, many find it helpful to watch their heart rate and pay close attention to physical symptoms such as pain, getting short of breath, etc. Crashing is a physiological phenomenon, not a cognitive or behavioral one.
I've never felt it to be of any practical use to explore how I'm feeling or thinking about my disease. Maybe some people would, but that would be an issue of adapting to a chronic disease, and nothing specifically to do with ME or even a majority of ME patients.
I find it difficult to believe they are acting in good faith. I think they despise patients and don't mind exploiting us to advance their careers by publishing this junk.
It is and I wonder whether they ever went to a good med school.
I'll go one further. I've followed a course in CBT and GET at Roessingh in the Netherlands. They've been trying to change my convictions about my disease(i really didn't have much of an idea about it to begin with). They've pushed me to work out. This all ended in selfblame and overexertion. Only to stop when I read Michael Maes' book, subsequently went to find out more about my disease and finally submitted myself to tests at KDM. It was like a huge burden was lifted from my shoulders. KDM in turn told me to stop sports(football/fitness) and the dutch M.E. community on me-gids.net helped me to stop overexerting alltogether.
Gone was the selfblame, most of the malaise that comes with overexerting and I actually became a pretty happy camper after that, eventhough I still had severe limitations which had been made worse over time by said CBT and GET.
My mother actually pushed me to read Maes' book and find out more about my disease because it was clear to her that what I did at Roessingh wasn't working at a time where my response was to try harder and blame myself some more..