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*Puts more coins in the piggy bank ready to donate if @dave30th crowdfunds for another year*

Had to look that up. From wiki Yes. Given the Employer 's Handbook and the See M.E. Toolkit (now under review) I certainly don't feel AfME represent me. I would want MEA in there in the hopes they might provide a bit of balance to some of the AfME stuff, though they're not faultless either...

It's all becoming rather confusing..... The wording is curious. My (possibly incorrect) view is that AfME and MEA provide similar services as frontline patient charities. Forward ME having a different/separate function and acting as a mechanism where other frontline charities can come...

Definitely matches my experience. Too wired to rest and I don't know of anything that settles that down. Not relaxation or breathing exercises, nor meditation. You just have to let your system work through it while trying limit the damage. It's a bit like accidentally having a double shot...

The insidious thing about undermining the capacity of pwME to make decisions about treatments in this underhand way, is not only does it give the view that ME is a psychological or psychiatric illness that removes the patients ability to reason, any objection or argument on the part of the...

The snag is that peoplenhave the test and are identified as being at increased risk of developing something or other. They may be obliged to declare that to future employers, insurers, banks when they apply for mortgages etc.

I agree with @Trish and @Graham, you're both right to be worried. At one point my employer told me it was likely I would always have symptoms and so might as well carry on working anyway as stopping work wouldn't make the symptoms go away. I pointed out that while stopping work wouldn't cure...

Now @Milo has mentioned lung cancer, it reminds me if a neighbour who died of it. The day he was diagnosed, the oncologist put his chest xray up and showed him the tumour on the film. Then my neighbour noticed the date on the film and pointed out it was the wrong one. It turns out there were...

I this what VES is saying is that we can do that until we have no breath left in our bodies, but if nobody with true power to effect change is listening.....and they aren't because of the messenger rather than the message. In other words, it's not just our message that's the issue. It's us...

My issue with the video (& possibly other evidence)is this- 1- if someone wanted to discredit a group of people who were opposed to them, then making a video purporting to be from them is an excellent way to do it. Especially, if you're not going to go the whole hog and insist on a full...

I can remember a couple of stories over the years of very young women with (possibly ovarian - gynaelogical at any rate) cancer. By the time of diagnosis it was too late. The delay in diagnosis was mainly because they were considered to be too young to be at risk for the type of cancer they...

Welcome @InfiniteRubix :) @Action for M.E. has a rep who is a member here, but they went very quiet some time ago.

....but only for the patients. Nice little earner for those inflicting the damage, but they don't mind and so we don't matter.

You are of course right about the diversity. However - Some people can push a bit and seem to improve a bit in the early days. Then they push too far or get a flu and then it's downhill with little to no time off for good behaviour. We have no research that tells us how many (if any)...

I think it's fair to say that AfME are fully aware of IAPT. If not that would be another massive failing to keep informed of events and I don't buy that. Given the model they use so closely resembles the IAPT plan and O'Dowd's involvement and opinions, the probability that this feeds in, or...

Not only that - in a fluctuating condition your "baseline" can vary day by day. Your "baseline" can be affected by the light, heat, noise, smell, hormones, food (for those with issues), minor bugs..... Given, for some of us, PEM can take 3 days to show up baseline not only needs to take...

Basically, while we are wondering how we can slow down if not put an end to IAPT, and we're still trying to explain to AfME that their advice can and will harm, they're busily ignoring us and colluding to help bring IAPT about. So, no matter what they say, they obviously support ME as being...

Well done @Trish! Great letter! Thank you so much for the time and energy you out into it. I hope it hasn't wiped you out completely. @Action for M.E. , if you read this thread - for the record I agree with every word she said.

Fair enough. This is part of my criticism of where they are though. They colluded with the PACE trial, their advice pages are poor and do not make it clear that pushing through harms and that increasing activity may well cause long term damage. Their recent toolkit, advising DWP, seems to...

That is a rather good point. Unfortunately, it is AfME. That's the trouble - instead of advertising for a sponsored walk in aid of all the severely ill who can't, or those who can't walk as much as they'd like, or need to, it's just do a walk. Even if it's just a little bit ( we'll just...