Is being a member of an ME support group holding you back?

[IreneF]

There is an idea amongst some medical professionals that being in an ME support group, whether local, online or national, prevents us from improving. Recently, with a lot of help from my own PR support group, I created this relaxed analysis of why that idea arose, and why the logic was wrong. I didn't think it would be of general interest, but it seems to have taken off.

http://meanalysis.blogspot.co.uk/

As usual, my first draft was a lengthy, rambling affair, typical of a retired maths teacher, but my friends sorted me out.

Sorry, my mind isn't working well today, I can't read the whole thing...but I did notice the term "functional". In doc-speak, this means "medically unexplained symptoms" (MUS) or what used to be called psychosomatic. So if you assume that ME/CFS is "functional impairment"--i.e. non-physiological--then membership in a support group simply reinforces the conviction that you (the patient) are physically ill, rather than in need of psychotherapy or psych drugs.

Of course, support groups for "real" diseases are different.

 

[barbc56]

@IreneF

Good point!

 

[Dainty]

It doesn't hold me back.

It can make it harder to have any "illness free" bubbles in my life, so to speak.

Just like people recovering from trauma, sometimes it helps to talk with others about it, other times it can make it worse. The patient is typically the best judge of that.

I was one here daily for years, and then I only dropped around sporadically. Each is what was best for me personally at the time.

It's so weird what they think is making us worse. Gotta point to SOMETHING we're doing. What will they come up with next?

 

[Cheshire]

Sorry, my mind isn't working well today, I can't read the whole thing...but I did notice the term "functional". In doc-speak, this means "medically unexplained symptoms" (MUS) or what used to be called psychosomatic. So if you assume that ME/CFS is "functional impairment"--i.e. non-physiological--then membership in a support group simply reinforces the conviction that you (the patient) are physically ill, rather than in need of psychotherapy or psych drugs.

Of course, support groups for "real" diseases are different.

Functional is a treacky term.

Applied to a symptom or to an illness, it means there is no organic cause explaining it.
But applied to a function or capacity, like in "functional impairment", it is used in every diseases to mean that the patient cannot function normaly anymore.

 

[ryan31337]

Applied to a symptom or to an illness, it means there is no organic cause explaining it.
But applied to a function or capacity, like in "functional impairment", it is used in every diseases to mean that the patient cannot function normaly anymore.

An example being my recent CPET report stating: "moderate functional impairment due to metabolic disease".

Not to say the term isn't (ab)used by others though...