Yep! I agree, Richie. I think David put in a complaint about that too. I honestly don't think they care, but I agree with you that it isn't fatigue with no cause. I'm not sure where they got the description from, but it isn't accurate. I'm sure you could give them a better one, if they would care to hear it. Smiles to our Richie.

Yeah, I blasted them on that during the beta phase. Did no good.

Wow, I agree. That just perpetuates the mentality that CFS is just "being tired". It is so much more than that! I feel like "fatigue" doesn't accurately describe what is happening to my body when I can barely stand up some days!

I agree. It's not accurate and it sounds stupid. Would someone please correct it. It is rather insulting. Seriously.

everyone should send a complaint. Just bombard them. They messaged me saying they fixed it when they did nothing. Be diplomatic, but do your best to make them aware of the problem. being an angry customer sadly works better than being a nice one. Also tell them that the world health organization and senate view this as a neuroimmune illness. their definition is inadequate.

To be honest, I don't want to post on this board anymore if they leave that description up there. I'm too sick to be part of the answer to our illness, but I don't want to make things worse for us by validating this kind of trivializing of a serious illness.

There's a similar problem with the sexual abuse board. They described sexual abuse as something that's culturally defined, rather than something intrinsically wrong. Someone posted an angry response over there too. Is raping children OK so long as you do it on a pedophile vacation in a country where it's more culturally tolerated?

I'm sorry, but these descriptions on the headers of the support groups are totally unacceptable to me. Either they go or I go.

Wow, Richie, I agree about the abuse thing too. I mean, we have a moral compass within that seems to go beyond cultural norms. Any sexual contact with a child is abusive. AGH! Well, I will send a complaint about the ME/CFS description. As David said, we have to bombard them with complaints. I don't want you to go, Richie. At least post your journals. We would miss you so much if you weren't here.

And I would miss my DS friends very much too. There are things I'll go along with and things I won't go along with. Moral relativism about sexual abuse is a line I won't cross...anything sexual that's not about consenting adults is a deal-breaker for me.

They do have a Facebook page...complaining publicly on their page might help. I messaged them on Facebook on how difficult the new site is to use for those of us with severe disabilities. I just got a standard response that I think they are sending to everyone. I've actually been quite depressed since they messed up the site.

I think, perhaps, it would help if we gave them something accurate to put there. Some description from a health organization or solve me/cfs...not just say... fix it. Perhaps they dont know what to put and don't want to change it multiple times. Have to run (hah) to store while it's not blazing hot out but will look for something later. any thoughts?

My easiest suggestion is to just modify theirs. I have to give them props for adding the ME/CFS, that was something we asked for way back.... Chronic Fatigue Syndrome (ME/CFS) describes exhaustion that isn't caused by exertion, even when you have gotten enough rest and sleep. The cause is unknown, but it is a debilitating condition that makes day-to-day life difficult for those who have it and in it's severe forms leaves them disabled and sometimes bed bound. Join the group and discuss treatment, symptoms, and lifestyle changes that have helped.

Sounds like a great idea. I've been busy with a household project or I would have done it. I think the new clinical guidelines published by the Institute of Medicine would be the place to start. We could just condense them into something more brief.

I'm with you Richie! This entire site is a joke then they go and write an inaccurate description of the disease that we are in a support group for.....absolutely ridiculous as far as i'm concerned! I too want to just leave this new site but would miss my friends and the support too much! i'm wondering if anyone is listening to all of our concerns and is there anyone who can answer questions for us?? We're all just too darn sick to deal with all of this! Every time I come on to the new site I just sigh with frustration....I miss the old format so much!!

I feel much the same...unhappy with things, but knowing I would be even more unhappy if I left.

Is anyone suspicious that the person who wrote these descriptions was trying to make them all-inclusive so the site can draw in as many members as they possibly can? If that's what's happening, they're unlikely to make our disease description more accurate. That's crossing the line between support and exploitation of the chronically ill. And anyone who's had ME/CFS for a number of years knows that there is no shortage of greedy people who are all too ready to exploit us.

I hope I'm wrong about this and they change the description. But if they don't I'm out of here. I'm not going to lend credence to an organization that exploits the less fortunate in society.

I agree with Nina. We need to provide them with something that's more accurate. I hadn't thought of getting it from a health organization though, that's brilliant. And if we can't find one that fits exactly (as in being concise and easy to understand) we could tailor it to suit,