Search results

What efforts should we be making to tbat end?

I agree. It's disheartening. But perhaps the breakthrough will come soon, as speculated.

No absolutely I think we should be thinking about all the possible ways this could work. And what to do about low NK people if it were this way or that. But of course we know next to nothing currently.

The same treatment? How would that work

Back to waiting for that breakthrough paper again then. The one that could come from anywhere, or so we hope...

If this was the case, what might be useful treatment for low NK cell people?

Agreed. I just don't know how you make a healthcare system perpetually high on biopsychosocial bollocks see that. If only more of us could protest.

This is so incredibly disappointing to hear. I hope you're right but it really seems like there is a lot of vested interest in keeping the status quo. And they are winning so far. It's such an awful catch-22, can't move forward without a research breakthrough but they won't fund any research...

It seems they only ever do just enough science to 'justify' their approach and never delve any deeper

I have found that so many therapists think this is helpful advice. It wasn't helpful even when there were other things to focus on. Just the same sort of truism your family or friends might parrot at you. Sorry for your experience, it sounds hard.

Well, that's as illustrative as anything of why the BACME approach has to go.

I have some very unhelpful thoughts about the professionals involved in my care because of the unhelpful thoughts and behaviours they encoraged me to have around my illness, and the very unhelpful deterioration that led to.

@jnmaciuch what do you make of this study?

They used a higher dose in the pilot, and in the phase 2 they will use that same higher dose. The lower dose was given to 5 patients recently - 4 long covid patient and one person from the pilot who had relapsed iirc.

Im pretty certain it was the same dose for everyone.

There's one that was retreated with a lower dose recently after partially relapsing and this person improved a bit but it didn't last as long (they think cos of the lower dose). Iirc I think they're retreating others with the full dose so perhaps they've partially relapsed too.

Oh cool! That's great to hear. Good for her!

Do you know this from social media posts? I haven't heard anything since the video that was put out for that fundraiser last year.

It breaks my heart, honestly. I tried so hard. My partner did too, as did several friends who deteriorated from exercise. People who wanted to get better and work full time and live full lives. I would give anything now for the life of mild ME I tried to escape. And it was quite shit in the...

The extreme injustice in the fact that those of us who 'try to get better' in the way they would want often end up the sickest and thus as the biggest recipients of their disdain and neglect will never cease to make my head spin.