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Howard Bloom previously wrote about his experience with ME/CFS in the New York Times: https://www.nytimes.com/2018/01/05/nyregion/how-howard-bloom-writer-and-former-publicist-spends-his-sundays.html

It’s my view that due to years of neglect, ME patients are among some of the most proactive people I’ve ever spoken with, doubly so when you consider the limitations placed on them by their illness. How does the CMRC plan to include patient input with regard to research proposals and achieving...

Blog posts like this often strike the tone that there’s a big silent majority in favour of this view. From what I’ve read (social media, blog activity) it’s actually a very small but extremely vocal group who won’t stop going on about these things...which to me undermines activist effort...

I know this figure is used a lot, but based on completely unverified and anecdotal evidence, I think that 25% figure is inaccurate and the real total would be far closer to 35 or 40 (it’s supposed to be mostly housebound or bedbound in the 25%). This is just based on what I see online on social...

Is anyone aware of what group this is? Might be worth someone with writing experience getting in touch with some members

I wouldn’t say it was that bad. The only two lines that leap out to me are the ones about ‘inner strength’ and ‘not letting ME stop you from doing the things you love’. That’s it. Everything else seems an on-the-money assessment of someone who is milidly affected by ME but still not living the...

I don’t like it, for many of the reasons already outlined by others in this thread. I also accept that we all do advocacy in different ways, and if people think this is effective and powerful then that’s their right as well. We don’t have to shoot down everything based on personal...

I thought this was an interesting podcast to listen to from way back in the early 2000s. Specifically, it shows how if people unquestioningly carry out therapies that are based on poor science they can have devastating consequences. I’m sure you could draw parallels with some of the issues we...

Pretty good, yeah. For those who are thinking of diving in: Visits with two severely ill patients, a brief insight into mild ME, a visit to the U.K. biobank. I’m pleased to see severe ME further represented in media. One of my bugbears is the 25% statistic that’s used to show representation of...

Gosh that’s a lot to read. Thanks very much, I think I’ll have to tackle this over a series of weeks, haha.

Have these been uploaded anywhere for viewing?

I was careful to phrase my initial comment but perhaps not careful enough - I am really happy that this has been done and all the levels of participation from various groups (Biobank, severely ill patients) gives me encouragement that this will be very good!

Presenter says she got better through yoga, diet, and a positive attitude, but despite the potential pitfalls of such a statement this looks like it could be very good.

Pretty good, encouraging. He’s right about that window of opportunity too. Unrest is done, millions missing protest is in a week and the next iteration of the NICE guidelines will be done in 2 years time. I feel like that’s our best window to effect some change.

My only (very basic) grasp of science has been entirely created by the fact that I became ill with ME, so take this with a pinch of salt... The only thing I don't understand about this is...presumably we got ill many different ways. And even tho we ended up in the same, or similar state, surely...

A year of work for $100k seems very reasonable, I hope all people with ME would consider donating if they are able.

I agree that we should call him out when needed, but I feel like the battle isn’t going to be won via Michael Sharpe’s Twitter account. If that energy was put towards lobbying parliament I feel like it’d be a more productive use of time, but that is just my opinion. I also feel like going over...

I agree with this. I think we as a community need to change focus a little and stop spending so much energy bombarding him with tweets and contesting everything for days. It’s not going to stop Michael Sharpe from doing anything.

I would echo this. Make it as public-facing as possible. Frankly we have Twitter and forums to talk about the same issues over and over, I couldn’t really care less about hearing about the same old thing if it’s intended for me. However, making ME an interesting topic for those that aren’t...

Just posting this here - I ordered this kit as part of the promotion but never got round to using it. I don’t think I will now...so would anyone be interested in buying it off me at a cheaper but fair price + postage? It’s unopened and as far as I’m aware not specifically registered to me...