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Interesting reflections @Sly Saint! Had to think about that. My first reaction as a housebounder was that it's us at the severe end who get ignored, and that the mild and moderate ones get most of the attention. Then I realised that my view was based on my own experience of being unable to...

In New Zealand – different countries have different rules – if you only have haemochromatosis but are otherwise healthy your blood can be used as a blood donation. At the time of my haemochromatosis diagnosis I was still (wrongly) thought to have MS, so my blood was originally rejected because...

Especially since it's cheap and easy to do a basic screen. Most people here should have been tested for iron levels because uncontrolled haemochromatosis is one of the conditions that should be excluded before making an ME/CFS diagnosis. But if your doctor hasn't done at least a standard iron...

From the paper: This is intriguing. Does anyone know what “concepts of Precision Medicine with appropriate statistical analysis” means, exactly? And if it's any good at overcoming the limitations of minute sample sizes (which ME research seems to be full of)?

It's worth checking out the reference given for the circadian issues. Have only scanned it so far; it's a very long article but looks interesting though not directly addressing ME. Sounds like there are several different 'clocks' in our body, including in immune cells. So it's not just about...

I'm pleased somebody is trying to look at different onset patterns and course of the illness. However I'm dubious about the quality of the data obtained because: One, they use Fukuda. Two, 97% of the patients have co-morbidities, many with significant symptom overlap with ME/CFS. Three...

That's my guess, too. I have periods when, for no identifiable reason whatsoever, I need to breathe faster than normal. At other times, like now, sitting with my feet up in front of the computer, my breathing rate is a sloooow 4 breaths/minutes. And sometimes I sort of forget to breathe...

But there are members on this forum who endorse every word. I for one am putting my hand up.:emoji_hand_splayed: Thanks @Trish. Superbly formulated letter. :emoji_clap::emoji_clap::emoji_clap:

There is an option for that, sort of. Do as @Barry suggested and tick "Other", then email them your opinion "Doctors need to understand the importance of pacing, and provide patient education and support."

:emoji_thinking:Hmm... looks like this study would exclude all of us who experience PEM as a result of talking on the phone.

Thanks for the excellent suggestion, which I duly followed. This is what I emailed them as my explanation for choosing 'other' as one of my answers: Regarding the quick survey “What do you consider are the most important three things that a GP needs to know about ME/CFS?”: The single most...

Highlighting this thread about the Australian NHMRC ME/CFS advisory committee draft report currently open to submissions – from anyone, not just Australians. Submissions close 18 February 2019 (Australian time). Important for Kiwis as there is a very good chance that whatever the Australians...

Just giving this thread a bump. Only a little more than a month to go before the deadline. Submissions close 18 February 2019 (Australian time). Anyone, not just Australians, can submit. If you possibly can, please make the effort to make a submission, even if only a partial one. Our advocates...

Congratulations @Michiel Tack, you have produced the first severity scale that fits my condition and would have done so at any of the stages of ME I've been through to date. Like @Trish my different symptom types vary widely in severity and in the disability they cause. Typically with the other...

Not about ME at all but some of the issues discussed could be interesting since IL-6 pops up in some ME studies. Looks at effects of exercise (eek!) and of an IL-6 receptor blocking drug (with and without exercise) and how IL-6 signalling influences various metabolic and other processes like...

Don't worry @Hutan. No crying happened. In fact I couldn't help laughing at the the suggestion to consult my doctor. Please doctor, my reaction times are slow, do you have a pill for that? And how often do you get a test result that says something is wrong with you?! I did the test when at the...

Actually, if I was less severe and if I happened to live near Massey I would register for the study out of curiosity, to get more detailed information. Having knowledgeable patients engage could even help improve study design, if not for this study (protocols may already be fixed) then for...

I'm speculating due to insufficient information but it looks like they're intending to do test 1 up to threshold to establish where the threshold is. Then later do a 2-day test below threshold to see if patients can replicate their VO2max or whatever on day 2. There are lots of confounding...

The devil will be in the detail, for example it's not really clear what a “graded exercise test” is. Do they mean a gradually increased intensity during a CPET, or a programme of GET followed by a CPET? However, at face value this does sound to be in line with the ideas of the Workwell people...

@Hutan posted this online tool to assess reaction time in another thread: http://www.sleepdisordersflorida.com/pvt1.html#responseOut Just tried it and don't know whether to laugh or to cry at the result. I tried very hard and achieved an average response time of 694 msec. This resulted in the...