I understand this. But for me it's progressive, too, if you end up as a breathing corpse. Or if you commit suicide because it's unbearable after xy years.
Indeed, it seems from the informal poll its a minority that do not progress instead of the other way round.
Don't forget informal polls on this forum are completely unscientific. There are all sorts of reasons why such a result will be skewed.
Of course, thats why i called it informal.
This is very interesting.
I'm not sure I understand your first question - on average, the participants had an illness duration of 7ish years (it varied between groups, probably not enough to matter), they were in their 40s and had become ill in their mid-late 30s. They didn't follow them over time, they just asked them once.
I see. If i had been asked 10 years ago i would have said i was rather static, the decline was very slow and hard to notice but for much later hindsight (unfortunately), but if you asked me today my last 7 years has been very downhill
I can't read it, i lack the cognitive ability to get through it.
I think the question asked was inappropriate. "Has your ME/CFS progressed from when it began?" I think many people would answer yes to this question, because it's not uncommon to try and push through and then get worse, but not necessarily because the disease is progressive in itself. The more appropriate question would be "Is you ME/CFS getting progressively worse over time?(even with pacing)"
I look at it as a sum of all forces, if people are worse off over time then they have progressed. The mechanism is not well understood, is all progression from overdoing it into PEM, would it progress on its own if patients were diagnosed the day after they got ME/CFS and told to never go into anaerobic activity, do patients have the luxury of never causing PEM, how much did people overdo before being diagnosed or treated with GET, the possibilities are practically infinite and we don't know answers to these questions.
Yes, I think this study is a helpful snapshot but to really see how people's illness changes over time, you've got to follow them. At three different timepoints in my illness I would have been in three different categories, but I now know which category I really belong in. And it isn't the one I'd like to be in!I see. If i had been asked 10 years ago i would have said i was rather static, the decline was very slow and hard to notice but for much later hindsight (unfortunately), but if you asked me today my last 7 years has been very downhill
Gotcha. I can read quite a bit, but unfortunately I lack the cognitive ability to post much, hence the delay and limited post length.
From the definitions they gave and the responses they got, relapsing/remitting is really about those people who have quite defined periods of months or years when they are unwell sandwiched by equally defined periods where they are well. So a relapsing/remitting person might have a bout as a teenager, then have 15 years where they're functioning normally (or seem to be), working, socialising etc, and then relapse at 32 and have to stop work.
How does viewing ME as a multi-system disease lead to getting conned by quacks?
Everything you say, Dr Edwards, is quite true. And many of the drugs given to ME patients spike up the system, and the person is revved up like Michael Jackson, only to crash horrifically once they try to do a bit more, with the false sense of energy. The problem as you know is that this illness is unsustainable. Many in the medical and scientific field do not quite grasp why it is unsustainable: who can bear non stop flu feeling for years on end, daily, every minute, or constant nausea, and toxic feeling, and sick feeling. It requires the patience of Job. What are the ways of coping really for the severe? what can be done when nothing brings any relief? I am devastated, and in a kind of shock I will never come out of that in our day in the West all these young people have been abandoned. I never imagined this was possible in our time, what with the advances in technology in every area. The folks on this site are most likely moderate, or moderately severe, for someone who is severe cannot do the internet. They lie in their beds, day after day, month after month, year after year. I truly believe that this is not grasped. Yet, Dr Davis grasps this, for he sees it non stop; so do the parents of Tom Camezind, and other parents of the severely ill. What exactly are these parents to do? No, there is no urgency except for those impacted. And the imbecile name of "fatigue" has to be the worst bit of gaslighting I have ever come across. Forgive me for being so upset, but I am truly devastated that the young people have been thus abandoned.
I wish there were one more category for ME: fluctuating but overall growing worse.
Anyone feeling up to edit some of the pages recently cited with regards to the 'CCI-ME' story?
https://www.me-pedia.org/wiki/Craniocervical_instability
https://www.me-pedia.org/wiki/Intracranial_hypertension
Perhaps at least add links to the discussions on S4ME?