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I've just read an article by Dan Neuffer about recovering from #MyalgicEncephalomyelitis, which as @cfs_jo points out 
, uses language that will worry many #pwme.
Long THREAD. I do get to the point at the end! 1/18. https://twitter.com/cfs_jo/status/1274443597702672389?s=20
, uses language that will worry many #pwme. Long THREAD. I do get to the point at the end! 1/18. https://twitter.com/cfs_jo/status/1274443597702672389?s=20
As anyone following #VladsMEdiary knows, I think ME is no more a psychological condition than MS or heart disease. 2/18
One of the most suffocating experiences for ME patients is not when their condition is denied, but when doctors, therapists, bureaucrats think ME is 15% psychological.
The dreadful words: 'there is the psychological aspect ...'
3/18
The dreadful words: 'there is the psychological aspect ...'
3/18
Sometimes, patients with ME assume the doctor means that EVERY condition has a 'psychological aspect', and doesn't challenge what the doc says. That's almost never what they mean - the 'psychological aspect' is meant as special to ME. 4/18
This becomes hard, if the doctor is irreplaceable, if any available alternative would be worse -
potentially, you could end up with somebody who thinks the 15% aspect is 100%!
5/18
potentially, you could end up with somebody who thinks the 15% aspect is 100%! 5/18
But here is a Q. If the current recovery rate from #MyalgicEncephalomyelitis is 5%, how much further could we increase it WITHOUT significant research breakthroughs? Up to 6%? 10%? 15%??
6/18
6/18
I don't know, but let me speculate a little. I can see 3 factors which could make a difference in a patient's journey.
(A) Money. (B) Access to the best medical care. (C) Mind/body work - for example, meditation. 7/18
(A) Money. (B) Access to the best medical care. (C) Mind/body work - for example, meditation. 7/18
The question of money needs no comment. Anybody with ME deserves a peaceful and healing home environment, a paid care infrastructure, biodynamically grown produce, the power to remove toxic people from their life, and even a personal assistant! 8/18
Now what about access to medical care? What difference does that make? Well, it is no guarantee of improvement, let alone recovery; most ME patients in the best medical hands do not recover.
But, the difference is still enormous. 9/18
But, the difference is still enormous. 9/18
There are levels to this, you can have access to ...
1. Zero medical care.
2. Doc who accepts ME but can't do much.
3. Doc who is able to follow protocols, test, refer.
4. Doc who is a world expert in ME (a tiny number)
5. All the docs in category 4 combined! 10/18
1. Zero medical care.
2. Doc who accepts ME but can't do much.
3. Doc who is able to follow protocols, test, refer.
4. Doc who is a world expert in ME (a tiny number)
5. All the docs in category 4 combined! 10/18
Now I think the gap between between 2 and 3 is big, but the gap between 3 & 4 is much bigger.
I am not sure if any patient has ever managed to get near position 5, except perhaps Jen Brea.
And I imagine fewer than 1%, perhaps 0.1% of patients have access to 4.
11/18
I am not sure if any patient has ever managed to get near position 5, except perhaps Jen Brea.
And I imagine fewer than 1%, perhaps 0.1% of patients have access to 4.
11/18
So what's the difference between 3 and 4 in outcome?
Please take this with a kilo of salt. But here is a rough guess based on my personal observation: it may double your chances of recovery, and may even make significant improvement likely. 12/18
Please take this with a kilo of salt. But here is a rough guess based on my personal observation: it may double your chances of recovery, and may even make significant improvement likely. 12/18
What level 4 care does, basically, is apply all the latest research in the field to your individual case.
I will be talking and sharing more about 4 on my diary in the near future. 13/18
I will be talking and sharing more about 4 on my diary in the near future. 13/18
Now of course there are extremely rare cases, where the best medical care will actually make a patient worse. For example, but over medicating them. But then, the best clinicians factor that in as a risk. 14/18
So, let's go all the way back to (C), the Q of what difference taking mind/body work seriously can make.
Well, we know that ME is, among other things, a stress response disorder.
But we also know, that the stress we are talking about is remarkably non-psychological. 15/18
Well, we know that ME is, among other things, a stress response disorder.
But we also know, that the stress we are talking about is remarkably non-psychological. 15/18
It is such a common experience for patients with ME to feel toxic levels of stress without actually having anxious or fearful thoughts.
So now, slowly, we creep back to Dan Neuffer. I haven't assessed what he does. But . . . . 16/18
So now, slowly, we creep back to Dan Neuffer. I haven't assessed what he does. But . . . . 16/18
... he seems to share some assumptions with Ashok Gupta and his 'amygdala retraining programme'.
Now the most ready-to-hand objection to projects like this may be that they take (C) and go on to exaggerate its significance and conflate it with pathogenesis. 17/18
Now the most ready-to-hand objection to projects like this may be that they take (C) and go on to exaggerate its significance and conflate it with pathogenesis. 17/18
But I don't want to hammer that conclusion in, because I will be discussing and assessing these particular projects later.
18/18 END!
18/18 END!
