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I& #39;ve just read an article by Dan Neuffer about recovering from #MyalgicEncephalomyelitis, which as @cfs_jo points out 
https://abs.twimg.com/emoji/v2/... draggable="false" alt="⤵️" title="Nach rechts zeigender Pfeil mit Krümmung nach unten" aria-label="Emoji: Nach rechts zeigender Pfeil mit Krümmung nach unten">, 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">https://twitter.com/cfs_jo/st...
Long THREAD. I do get to the point at the end! 1/18. https://twitter.com/cfs_jo/status/1274443597702672389?s=20">https://twitter.com/cfs_jo/st...
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: & #39;there is the psychological aspect ...& #39;
3/18
The dreadful words: & #39;there is the psychological aspect ...& #39;
3/18
Sometimes, patients with ME assume the doctor means that EVERY condition has a & #39;psychological aspect& #39;, and doesn& #39;t challenge what the doc says. That& #39;s almost never what they mean - the & #39;psychological aspect& #39; is meant as special to ME. 4/18
This becomes hard, if the doctor is irreplaceable, if any available alternative would be worse -
https://abs.twimg.com/emoji/v2/... draggable="false" alt="🤯" title="Explodierender Kopf" aria-label="Emoji: Explodierender Kopf"> potentially, you could end up with somebody who thinks the 15% aspect is 100%!
5/18
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& #39;t know, but let me speculate a little. I can see 3 factors which could make a difference in a patient& #39;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& #39;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& #39;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& #39;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& #39;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& #39;t assessed what he does. But . . . . 16/18
So now, slowly, we creep back to Dan Neuffer. I haven& #39;t assessed what he does. But . . . . 16/18
... he seems to share some assumptions with Ashok Gupta and his & #39;amygdala retraining programme& #39;.
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& #39;t want to hammer that conclusion in, because I will be discussing and assessing these particular projects later.
18/18 END!
18/18 END!
