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Echoes of 'it was an easy PhD'

What I need: expert doctor to liase with GP surgery and specialists to explain I need home visits and accomodations if I need to have a scan or whatever done. Doctor to reguarly check if new or existing symptoms are caused by something we might have missed. Opportunity to take part in drug...

Yes I hate that stuff Yep if partner and I had had this information when we first got sick our lives would look completely different. People need to have the right information soon after onset or things can rapidly go wrong.

I think it would be good to get home visits from doctors and nurses who can look for any other conditions that might have been missed due to negligence on the part of GPs etc.

Is it worth writing that this treatment has a shaky evidence base and they should explore anti CD38 therapies, look into the DecodeME genes in pw LCME and fund their own GWAS + WGS? Or will it just be ignored? I don't trust recover not to completely f-k up the patient selection at this point...

Perhaps this is a cost/showing efficacy thing and they will do this at some point if they have reason to think NK cells effect on drug action is the link/cause of the separation

Yes I realised that shortly after posting! Temper may be a little short today. Thanks for advocating for us at the meeting, even though it didnt go as hoped.

I'm currently waiting for my partner to wake up and struggle through making dinner whilst I lie here unable to help her because we were both completely crippled by the bullshit these people spout. There are countless other people in this state because of them. So forgive me if I'm not in the...

At this point, this is inexcusable medical negligence and iatrogenic harm on a grand scale and the people responsible deserve legal consequences.

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.