That, I think is the reality but in our efforts to get taken seriously we don't talk about it very much and there are people who are robbed of very real and reasonable hope.
Can't agree that people are being robbed of hope, rather it's the other way around (at least here in the UK); the popular myth is that recovery is almost inevitable and if not, "improvement" is. The charities strongly push the "good news" and the medical profession only push bad news if they want to compel people to get on the CBT/GET bandwagon (of false hope again), while the media print any old quackish brainwashing. So false hope is the order of the day.
Yes it's like the MS subgroups though I haven't heard of anyone with MS "in recovery"; as far as I'm aware it's always there in the background even if you have years of remission from it. In whic case "recovery" is just as bad a word to use as it is in M.E. Until biomedical testing is being done we can't say anyone with ME has "recovered" either; or whether they definitely had ME to start with.
When I used the word remission I didn't mean to imply "recovery" -- they are totally different things IMO. Recovery equals cure, with no chance of relapse, whereas remission means a great improvement to some degree or other but the chanc of relapse is present. Though I think the absence of exertional intolerance would be in many sufferers minds, a quantum leap from what they have. Most people who claim recovery even, on questioning admit to still having problems so it's an extremely unreliable term to use and I wouldn't recommend it. Use of terms like this enable subjective PACE trial shenanigans and the like.
I think there's more of a case for remission even if some problems persist, as the core of the illness revolves around "PENE". I think any disease where remissions occur has to acknowledge them as exceptions to the definition unless there's an underying biomedical constant (like a gene or viral presence) to define them better.
The consequences of promoting the myth of "recovery" is quite dire; people who could get help adapting to the illness are instead encouraged to just put up with any and all injustices because of a supposed end prize that never comes, precious time is lost. By the time the sufferer realises they've been hoodwinked it's difficult to belatedly put into place disability adjustments, largely because others have become used to seeing them as "not a proper disabled person" and "they seem to be managing ok by themselves" or "we saw them do x so they can clearly do things for themselves". It's better for these adjustments to be put into place while the initial "shock" is still fresh and the professions haven't got used to getting away with it.
I don't think all this stuff about protecting noob's feelings helps really, all it does is feed into these myths, including difficulty in describing the illness or asciribing to the wrong descriptions, that's why even mild sufferers attack and blame severe sufferers in a way they wouldn't with MS. With MS there's still a popular view among the general public that it's a death sentence and that seems to have been necessary in politically recognising it and doesn't seem to have harmed new diagnoses, even though in reality a lot of pwMS look just like pwME.
I do want to see these various phenotypes of ME recognised but until the deafening roar of trivialisation and mythologisation is silenced it's going to be the severe cases that continue to suffer out of all proportion, and that includes initial milder cases not managed correctly. There may be more people more chronically, severely affected by ME than by progressive MS. We don't have ANY disease modifying drugs officially available, a serious sounding definition and no good epidemiology (thanks to CFS def) so we can't assume the fgures are comparable.
At the end of the day hope is less important than people getting the support that they need to live with an unpredictable, disabling disease. Hope doesn't put food on the table. Without the support, "hope" is merely licence for cruelty. With the support, hope is inevitable, but with hope only, support may simply be deemed irrelevent; a waste of resources. This is born out by the CBT school's chilling effect on social perceptions of need. The irony is there would be more cause for hope if the support came first, enabling better prognosis; the latter is largely conditional in strictly defined ME. As I used to try and convince people, "it doesn't get better no matter what". But the CBT school doesn't accept any such link and instead tries to sell you hope. The old papers might have been generally poor on long term chronic M.E but maybe that's because they were all pro-rest or energy conservation in the acute phase, so they could afford to be more "hopeful".
We need to stop worrying less about the early psychological needs of sufferers and worry more about the long term consequences of ignored physical needs (and abuse). It's 2012 and we still don't have good guidelines, care homes, appropriate training programmes for professionals, awareness in emergency rooms, people not being sectioned/removed, available testing etc. How about some anger/concern/priority over these issues.
Purist "hope" can wait til we've a reason for it.
Of course I'm speaking as a Brit, I hear the sun shines out of M.E. elsewhere ;-)
