UK: 'Managing my ME', 2010, ME Association

I'm not objecting to this having been posted because it's interesting. But what prompted it to be posted 10 years after it was first published?

 

Certainly in Scotland there are no hospital based physician's for M.E. as far as I know. Wasn't it the nice guidelines that said a gp should handle it, leaving us vulnerable to the bps lot? I personally don't like the gp thing. I've never had a gp that wanted to do anything with my m.e. my current gp would be happy enough to send me to a consultant for m.e. but there's no way he's going to do anything himself, he doesn't know anything about it except fatigue, and even if he did he only has 8 mins to discuss it. In some parts of the country, a gp is only allowed to discuss one issue per appointment, with m.e. you can't keep going backwards and forwards!

 

It says 59.6% of members thought alternative medicine was helpful. I'm worried that if people read that they will conclude that ME is psychosomatic.

 

until they actually teach M E from the present state of biological knowledge i would not be happy with any member of the british health system inferring they know how to treat M E . removing biased assumptions from people who have already been witless enough to take them on board would be an extremely difficult task unless their is a suitable system for reporting the delusional attitudes of many health care non providers .there will be no change until we have a proper inquiry and suitable admonishment for the catastrophe that has been inflicted and is still being inflicted on medical education the political will to make illnesses disappear to cut cost of health care also has to be acknowledged to be false since there are no savings ever in allowing large segments of sick people to be abused and neglected .

 

That's really a problem with the tyranny of low expectations that defines "helpful". A free meal is helpful. Lots of small things are helpful. Helpful is extremely vague and wide-ranging and is rarely significant. Helpful is just about the lowest tier of having a positive effect that exists. Most alternative medicine is helpful. It doesn't do much, but it's helpful. Helpful doesn't mean much, so almost anything counts. Hell, a smile can count as helpful in many situations. A free cane is helpful to someone who is paraplegic, it can be used to whack people behind the head or something if they say too much tripe about the only disability being a bad attitude. Just not nearly as much as a wheelchair and an accessible home and regulations to upkeep that access.

Helpful is simply not a clinically valid... anything. It's this race to the bottom that has completely paralyzed clinical psychology, everyone tries to reach the minimal effect and stays there, unwilling to budge because someone "helpful" is turned into "that's just as good as life-changing". Which it isn't, because then people would say it's life-changing, not that it's merely helpful, which someone holding the door once qualifies as if someone is carrying to much stuff to grab the handle.

I really don't understand how that became not only an acceptable standard, but seemingly the only thing people ever do here. As long as it's helpful it must be good and must be kept forever and don't you dare say it's not helping.

Which, again, is just alternative medicine. I have no issues with alternative medicine, but it has different, lower, standards, ones that make little to no difference in real life.