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I don't think it's productive to unnecessarily diagnose people with personality disorders. You know this forum is public?

I think whether something counts as lobbying congress depends on the context and is up to interpretation. I think telling congress about ME would only be appropriate if they didn't know about it or it wasn't well known. Given that many members of congress and their staff members are already...

I don't understand this idea that seems to be floating around nordic countries that ME is a fashion illness. Most sufferers have ME for years before they get diagnosed or even hear of the condition. The evidence simply doesn't check out on any level.

This is a video just made by some students for a class. I think it's better just to ignore it and not give it views. I don't really care if some students make a video for a class that misunderstands what CFS is.

I can't comment on whatever their activities in the UK might be, but I think they are on the right track with WHO. ME exists in every country and is a global issue. While it has got attention in mostly English speaking countries, I think in many countries it's hardly got any recognition or...

I'm very happy for her to have whatever political views she wishes, but the way she talks about Carol having ME as if it stems from having some kind of personal weakness of will is pretty concerning. It reminds me so much of the kind of attitude I've encountered (that the fact I have ME relates...

Whether something is disparaging is up for argument. I do think that some of the comments in this thread have had a disparaging tone (someone did say they hated her), but it doesn't matter. I don't think we should go about deciding that someone can't have ME if it's plausible that they might...

Yeah, I totally agree with your concerns about the story. I just don't like disbelieving or disparaging people if it's fairly plausible that they do have a condition (which could be ME) and it affects their life significantly.

Well I think there's variation amongst people. Your experience (and mine) isn't the same as everyone else. Maybe she doesn't have ME, but I think it's plausible she could have a kind of ME which is still pretty disabling, but still allows her to do some training.

It is fairly plausible that she has ME. Say she's at the level of severity of people with mild ME - ones that are just able to work full time, but are hardly able to do anything else. Nowhere near severe or moderate ME, but, as far as medical conditions go, still very disabling. If she works...

Those numbers quoted from Stats Canada do seem correct. Here's: http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng.htm some numbers on their website from previous years. Half a million is also quoted on the Canadian government webpage...

I think most of the reviews on steam seemed to get the basic message. To me, at least, her lack of activities didn't particularly seem like a choice I think the developers (who are students) should be congratulated on their effort, at least. It seems like a pretty good effort to me

The game isn't perfect, but in terms of getting the basic principle across (of only having the capacity to do a limited set of activities, and how it's frustrating), I think it does fairly well

Thank you, I'm glad that you didn't mean that response in that way. I assure you, my primary limiting factor is PEM, and I meet the IOM diagnostic criteria perfectly. I don't think that anything in my post particularly implied that wasn't the case, I was just talking about fatigue in a fairly...

I didn't say that my activity is primarily limited by my primary feelings of fatigue, but that doesn't meen that I don't experience feelings of fatigue, and the things this questionnaire covers. That's a very big extrapolation to jump to, and it's completely untrue. I assure you, I know my...

That seems like a quite a good critique of the CDQ. I feel like any questionnaire that focuses on the subjective feelings of fatigue is going to be relatively flawed, because, many people with ME/CFS don't know how to compare their feelings of fatigue with anything. I might call the kind of...

Yes, that might well be true. The concern is just that his response may frame the debate more towards "are patient groups negative?" and "can people with ME/CFS recover?", rather than "dear god, a family committed suicide because of extreme suffering" edit: (although I don't think anyone knows...

It is absolutely disgusting, I absolutely agree. I'm very sure, though, that's what he's trying to do - he's trying to distract from the true message of the tragedy. This kind of strategy is really commonly used (especially from politicians, for example)

I think when people make tweets like this, it's best not to give them too much attention. He's just trying to distract from the fact that they killed themselves because ME/CFS is such an extremely devastating condition, and get everyone caught up on a totally different issue.

Well, the points that everyone have made are reasonable. I still think that many patients greatly overestimate their scientific ability, and it's extremely important that patients themselves don't fall into group think, but I see the validity in everyone's points. If patients do want to have...