Good findings, especially on what looks like illness progression in an unusually large sample, thank you for publishing Arild and Trude. In my opinion, as a psychosocial practitioner, I think the evidence is pointing towards ME being a very serious physical illness that has few social determinants and no psycological compenent. The biggest determiner is sex. What shocks me about these findings is the absence of earlier longitudinal studies, particularly when there are well established ME organisations with 'supporters' who would be more than willing to participate. Does anyone know why this area of research has been ignored?
Misogyny, unfortunately. It started in the 70ies and became big in the UK with the fraudulent PACE trial that preached the neurological inflammatory disease was psychosomatic since it mainly affects women (hysteria). It's supported by an international network of psychologists/psychiatrists related to the English squad. This network is still very active, by the way, defending their careers at the cost of patients. It's ugly.
The survey showed just 1% of patients in the UK have very good medical support. Does that mean only 1% of GPs are helpful? Thanks for the interview. It's a shocking picture of reality, and very different to the 'most patientds improve over time' narrative that we have heard for so long.
People recover from this illness literally all the times, if you think it's incurable, you need to do some more research, it's possible for lots of people.
Not really. Sometimes GPs don’t have access to specialists beyond themselves (eg in Scotland we currently have zero ME specialists available to access). Also not every GP is meeting a patient with ME, so 1% of patients is not the same as 1% of GPs - and some GPs may be seeing more than one patient! Sorry, confusing, but my point is just that no, 1% of patients *reporting* good medical support [remember not every ME patient responded] does not mean only 1% of GPs are helpful. I have finally found a supportive GP, but the lack of resources means despite her support I can’t say I have “good medical support” because there is no specialist to help me learn to pace well, or teach me ways to cope with different aspects of the illness specific to me
@@FionaC1 Interesting how you just ignore my comment, which is more valuable than this video or any comment on it, "ignorance in the 21st Century is a choice"
@@FionaC1 Hint: NHS 'Specialists' are not actually specialists, they know nothing about recovering from the illness and being healthy, the NHS don't have answers to long term issues that can't be resolved my medication.
18:19 when looking at age of onset, I’m curious if you controlled for cohort effects? [eg Someone with onset 35 years ago (like me) had far less access to knowledge and help than someone with onset 5 years ago even though they may have been diagnosed/had onset at the same age as me.] Similarly, onset to diagnosis looks very different depending on when that happened.
Fwiw, CBT for coping, doesn't even rank among the top 3 of appropriate / needed therapeutic approaches --- grief / loss therapy, medical trauma therapy, logo therapy are far more helpful --- CBT is most helpful for learning how to pace.
Thank you for what seems a very interesting survey and report. And thanks to David Tuller for doing this interview.
Good findings, especially on what looks like illness progression in an unusually large sample, thank you for publishing Arild and Trude. In my opinion, as a psychosocial practitioner, I think the evidence is pointing towards ME being a very serious physical illness that has few social determinants and no psycological compenent. The biggest determiner is sex. What shocks me about these findings is the absence of earlier longitudinal studies, particularly when there are well established ME organisations with 'supporters' who would be more than willing to participate. Does anyone know why this area of research has been ignored?
Misogyny, unfortunately. It started in the 70ies and became big in the UK with the fraudulent PACE trial that preached the neurological inflammatory disease was psychosomatic since it mainly affects women (hysteria). It's supported by an international network of psychologists/psychiatrists related to the English squad. This network is still very active, by the way, defending their careers at the cost of patients. It's ugly.
The survey showed just 1% of patients in the UK have very good medical support. Does that mean only 1% of GPs are helpful?
Thanks for the interview. It's a shocking picture of reality, and very different to the 'most patientds improve over time' narrative that we have heard for so long.
People recover from this illness literally all the times, if you think it's incurable, you need to do some more research, it's possible for lots of people.
Not really. Sometimes GPs don’t have access to specialists beyond themselves (eg in Scotland we currently have zero ME specialists available to access). Also not every GP is meeting a patient with ME, so 1% of patients is not the same as 1% of GPs - and some GPs may be seeing more than one patient! Sorry, confusing, but my point is just that no, 1% of patients *reporting* good medical support [remember not every ME patient responded] does not mean only 1% of GPs are helpful.
I have finally found a supportive GP, but the lack of resources means despite her support I can’t say I have “good medical support” because there is no specialist to help me learn to pace well, or teach me ways to cope with different aspects of the illness specific to me
@@FionaC1 Interesting how you just ignore my comment, which is more valuable than this video or any comment on it, "ignorance in the 21st Century is a choice"
@@FionaC1 Hint: NHS 'Specialists' are not actually specialists, they know nothing about recovering from the illness and being healthy, the NHS don't have answers to long term issues that can't be resolved my medication.
Also I like the biopsychosocial stuff - totally agree. Let's reclaim what that means back to what it's supposed to mean!
Really interesting study. Thanks for sharing
18:19 when looking at age of onset, I’m curious if you controlled for cohort effects? [eg Someone with onset 35 years ago (like me) had far less access to knowledge and help than someone with onset 5 years ago even though they may have been diagnosed/had onset at the same age as me.] Similarly, onset to diagnosis looks very different depending on when that happened.
Fwiw, CBT for coping, doesn't even rank among the top 3 of appropriate / needed therapeutic approaches --- grief / loss therapy, medical trauma therapy, logo therapy are far more helpful --- CBT is most helpful for learning how to pace.