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Agreed. But I don't think that is what is being bantered around here. I may be wrong, but it seems to me the crux of the thread is to clarify what steps can be taken to correct what are perceived as other patient groups' errors.

I appreciate wanting to get it right, wanting others to get it right. Playing the role of spoiler, however, comes with risk. If we want to be naysayers, I suggest we'd best be in a position to replace what we're undercutting. What do we actually know about the biologics of ME/CFS? Not much...

I'm not sure. I don't even know if it works since I've seldom taken it alone - it's always in conjunction with other sleep meds.

Grim stuff. I cannot live without sleep meds. Evidently I can't live with them either.

I have never heard of such a thing. Maybe they believe they have brain damage and assume it's a common ME/CFS feature? I wouldn't be so quick to attribute nefarious intent to fellow patients.

It's not dead yet.

I don't think this credibility with patients' explanations is necessarily at the root of the problem nor peculiar to ME/CFS. I don't think it's an accuracy thing as much as it is a siloed thing compounded by arrogance. I see it in cardiologists when I attempt to explain a channelopathy''s...

New? This has been a refrain for two decades at least.

I've a couple concerns about this thread. The difference between patients who spread biobabble and clinicians/researchers who spread biobabble is power. Power resides with the latter group. There is no equivalence here. The onus is squarely on clinicians and researchers. Patients are just...

Sure, but it's not as if there isn't precedent. AIDS activists did it at a time their illness was taboo because of its own stigma. Of course, death was the ultimate advocate and helped immensely since it was politically garish to see so many dying. But that stigma was huge at the time, and only...

Individual politicians are vilifying the sick regardless. At the very least, a coordinated entity from disparate communities of the sick could generate an effective response. But perhaps even better, since as you've pointed out there's years before a general election, there's time for distinct...

I'm not from the UK, and I apologize should this come off as naive, but could you move to legislate change? Through the vote? How large of voters' block might pwME and LC and PTLD and MS and Parkinsons, etc,, command? If they were somehow mustered together, coordinated? I often wonder about...

Sickness behavior implies an observer. It involves a third party perspective. Little wonder it was coined by a veterinarian because his patients couldn't directly communicate how they felt. He had to infer. And by virtue of the word "behavior", thanks to the BPS cult, sickness behavior is...

PEM shouldn't necessarily be a qualifier. It should be proof. You don't have to have it for an ME/CFS diagnosis, but getting it cements the call.

As an interim? Until we have a pathology-tool? Patients have to deal with more than mere diagnoses. They have to provide proof. They've employers, disability agencies, family and friends, etc, they have to demonstrate disease. Things that can help are things that can help.

I'm sorry if this is redundant. What if PEM is peculiar to ME/CFS as most of us have posited? What if all these new diseases that claim PEM have - at least some of them - PEM, and that they've evolved into a condition where the Decode ME genes are activated? A qualified questionnaire might be...

That made me chuckle. Judging by my experience with other diseases like Lyme or Babesia or ME/CFS there are usually less doctors who think those patients have a chronic disease than actually have it.

Rationing is brilliant. I am wary of any word that has fatigue in its root. Maybe try replacing with a word thats not even medical, but conveys similar feelings? Waning, ebbing, etc, something that connotes a dminishing. Sorry, just spitballing. But I fully am behind the rationing idea.

Cool. Who is?

Cognitive impairment can be sustained when it occurs in pwME ( it doesn't in all pwME). Brain fog is an inadequate qualifier, btw. I can awaken with brain fog, and shake it away before I get out of bed. I cannot shed my cognitive impairment regardless of how I try. It's worse with PEM, but...