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@Jonathan Edwards Are you saying that PEM is not what the CPET measures and PEM is something else, or more than, an abnormal physiological response to exertion? I realise it can give false positives where it doesn’t show a reduction in AT, but where the patient clearly suffers from PEM in some...

I’ve probably addressed this in my follow up post below, but obviously if sometimes her PEM came on up to 3 days later, we wouldn’t think a test 24 hours later would be a reliable measure for her. This is obviously one of the considerations we took into account when determining the validity of...

Not sure about that. But it’s the increase in anaerobic threshold (AT) after exertion that I thought was most significant, when previously it had reduced. I wasn’t very clear though in my original post and didn’t give enough detail. We did the second CPET 18 months after the first one because we...

This confirms that my daughter will likely not be eligible for the study then, as her CPET results in October showed that she now doesn’t deteriorate after exertion, thus no longer has PEM. Technically, she no longer has ME and is in remission. Had she not taken the exercise test though, we’d be...

Discussion split from DecodeME - UK ME/CFS DNA study underway Copied post This confirms that my daughter will likely not be eligible for the study then, as her CPET results in October showed that she now doesn’t deteriorate after exertion, thus no longer has PEM. Technically, she no longer...

The Workwell Foundation in the US will write you a brief letter summarising the results for $300, but unfortunately won’t provide a detailed analysis unless they’ve carried out the tests themselves. I used the results for PIP and UC and wrote my own summary referencing the aforementioned...

We did it because we wanted to objectively measure and understand the physiological response to exertion in order to inform our day-to-day approach to managing the illness. In our case it has been the single most helpful piece of information we’ve been able to get. Agree it should not be made...

Sounds fab! What council is that? Maybe I can do that with other councils.

I sent it to the HT at my daughter’s school and she’s holding off circulating it until September. But she said she was impressed with the fact that I got the article published, which gives credence to the info in it, I think! I’ve sent it to various teachers I know personally (different...

Thanks for posting it @Andy.

Yes, I did! I said almost exactly that. And that it would therefore be very welcome if her article was published in there.

I spoke to Catherine today. She’s very much on the biological side and said she’s spoken to many medical professionals and none of them subscribe to the bps model. She’s hoping to get the article in one of the mainstream papers, hopefully the Guardian.

She’s interviewing me on Wednesday and she seems to be doing her research. It sounds promising.

I would pitch for a short series, with each episode focusing on one aspect of ME; eg. daily life, lack of research, wrong treatments leading to deterioration, children and threat of FII and school attendance.

Yup! I used it this morning on Radio Solent!

A few pics from Southampton today. We put down 378 pairs of shoes which grew to over 450 throughout the afternoon. Two city councillors came down, one who is in charge of adult social care in Southampton. Both asked to be kept in touch with MEAction’s campaign. The other gave me an interesting...

We submitted this to them as a completed article. They asked me for something last year after coming down on the day. A community journalist also came to MM last year to write an article and she interviewed a few people afterwards. So I combined the two. It took so long to get it finished that...

I’m pretty sure, having read the magazine, that it’s based around the English school system. That said, it’s worth me looking for a Scottish equivalent or asking the publisher if they distribute anything in Scotland. So thanks.

Excellent! There’s another one coming out at the end of June aimed at Secondary school teachers. The message is broadly the same but has more relevant language to resonate better with the target audience.

Thanks for posting it @Andy. I was hoping they’d put it online and now both the magazine and Teachwire have tweeted it as well. I’m sure this is because of the level of response to it on social media. My own tweet sharing the images (before it was online) has been seen over 13,000 times and has...