Frustrated by peoples perception of ME/CFS

[Luke]

In a youtube video

ex-jehovahs witness activists talk about therw being this "phenomenon" of me/cfs among Jehovahs Witnesses. Which is very frustrating to me because the premise is that being in a cult affects your mental health or causes depression (no debate there) but saying me/cfs is also higher among JWs seems to imply me/cfs is somehow a mental health issue too. As if you get me/cfs for mental reasons.

You can read my comments in the youtube link above. (You need to click the video and then click the link text in the video to open the video and comments)

To me, claiming that me/cfs is higher in people oppressed in a cult than in the general public smacks of the implication its a mental thing.

Youll see in my comments to the video... i was NOT a JW... i LOVED my life.. i was earning good money... yet i got ME/CFS.

I hate how me/cfs is lumped in with depression and mental health! I hate how people do not understand this disease yet think they do.

So much education is needed to bring people up to date with the current body of scientific resesrch on me/cfs and we have one man to largely thank for this (in my opinion): Simon Wessely.

 

[Not dead yet!]

Idk, I'd say it's more of a lifestyle thing. There's a lot more close contact and community contact among them. So it's not really a mental issue. If anything, it tells me that close knit communities are more likely to pass along germs. The Asians have it right... don't be embarrassed to wear a mask.

I did watch a few minutes of the video, but 50 minutes is too much for me. But a couple of things stood out as I jumped around:

1. They mostly avoid blood transfusion so the vector for them must be something else.

2. The "anointed" among them admitted to breaking the rule mentioned in #1. -- which means they have the attitude like many pro life people that "only my (transgression) is morally right." ref: http://www.prochoiceactionnetwork-canada.org/articles/anti-tales.shtml

3. As a group they are depressed according to this survey. There is plenty of evidence that says being depressed lowers your immunity. So I don't think it's such a bad thing that they're talking about both issues together. It's like saying "deconditioned" -- well duh, if you can't move much, you will be deconditioned, and possibly depressed. And if you're depressed and you contact a pathogen, you might not fight it off very well.

Lots of illnesses have comorbidities. Being sick is depressing. That's not mental illness, it would be mentally ill to be happy about being sick.

 

[Abrin]

So much education is needed to bring people up to date with the current body of scientific resesrch on me/cfs and we have one man to largely thank for this (in my opinion): Simon Wessely.

I completely understand how slow and completely frustrating it has been with what little understanding there has been about this disease/disorder but the good news is we are finally making gains!

Just recently the CDC finally removed CBT and GET as recommended treatments for ME/CFS.

And Jennifer Brea's Unrest documentary has been impressing a lot of people.

That being said, I know this is all coming super slow at a snail's pace and that it sucks when people say things about ME/CFS that just aren't true. I completely understand your need to vent about it.