Published comments on article: Komaroff, Advances in Understanding the Pathophysiology of ME/CFS

[WillowJ]

I found a really interesting comment on the article.
https://jamanetwork.com/journals/jama/fullarticle/2737854?resultClick=1#comment-wrapper

Someone reports:
1) they themselves have an adrenal condition and they do not think HPA stuff explains ME/CFS (I happen to dislike this theory myself, partly because low adrenal is a different diagnosis altogether and partly for reasons I forgot, but they were good ones! )

2) they know 3 people who spontaneously [edit: rapidly] recovered, one immediatly upon waking from anesthesia

If this is in the wrong section, feel free to move it. I wasn't sure where to put it.

 

[jpcv]

Merged thread

In the comment section in JAMA´s recent paper by Dr. Komaroff there is a very intriguing letter from a retired pysician.
He says he encountered three patients who had a remission from ME after serious illnes or physycal trauma:
-peritonitis
-Broken arm
-Severe burning of the hand
The peritonitis case is interesting in that the patient felt that she was in remission as soon as she recovered from anaesthesia, just like J.Brea described her case after CCI surgery.
Rebooting the brain?
It makes one wonder...

 

[ukxmrv]

I've had all sorts of accidents and illnesses since ME struck me out of the blue (acute viral).

None of them have caused a remission sadly and all have left me even more disabled or with increased ME symptoms.

Lucky them

 

[Trish]

I have come across one person who told me she had ME until she spent some time in intensive care with an infection that nearly killed her. After that her ME had gone!

On the other hand I have had minor surgery and a broken bone, and my ME was, if anything, worse afterwards.

 

[Mithriel]

Years ago, they treated syphilis by infecting the patient with malaria using the high temperature of malarial fever to kill off the bacteria. The same approach was used for cancer with some success in the thirties but destroying the cells with radiation won out.

Trauma gets lots of repair mechanisms going and it is plausible that they could fix the ME at the same time while ME alone does not trigger a reaction.

 

[ukxmrv]

I have come across one person who told me she had ME until she spent some time in intensive care with an infection that nearly killed her. After that her ME had gone!

On the other hand I have had minor surgery and a broken bone, and my ME was, if anything, worse afterwards.

There's always been a smattering of stories from PWME who had IV AB's in hospital and recovered. When I developed an infection and ended up in that position I hoped I'd be one of the lucky ones.

Also even though the Rituximab trial didn't work out we will still have the odd ME patient coming through to groups saying that they went into remission after Lymphoma treatment.

Be interesting to hear what drugs various PWME get before they go into remission. It may not "just" be the trauma but something given to them maybe?

 

[Louie41]

I've had all sorts of accidents and illnesses since ME struck me out of the blue (acute viral).

None of them have caused a remission sadly and all have left me even more disabled or with increased ME symptoms.

This is my experience exactly, including CPR, a near drowning, IVIG, several surgeries, and assorted illnesses.