MeSci
ME/CFS since 1995; activity level 6?
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- 8,231
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- Cornwall, UK
Has the previous one resigned, or is it a new position? Is the job intended to replace or complement the SMC? Interesting...
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Scientists post open letter to Lancet on Virology Blog - call for independent re-analysis of PACE
- Thread starter Sasha
- Start date
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
I must object. I used to be a member of the Mornington Crescent Working Men's Club Orchestra and it was then, and still is, the centre of the known world. It is just that the centre is not so well known to people further out. The station is now very much open.
SOC
Senior Member
- Messages
- 7,849
Where's the original reference in this thread to Mornington Crescent? Are we suggesting sending SW and crew there? Please, can we?
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
Well Humph is dead bless his cotton socks. I suggest we play the third Cholmondoley variation, so we can always have another go after happy hour.
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
Jack?
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
http://forums.phoenixrising.me/inde...endent-re-analysis-of-pace.41220/#post-664469
Blame @Jonathan Edwards for mischievously introducing a reference that will flummox most non-UK (and some UK) readers.
If you do it the Klimas group way you would be ok becuAse is not based on duration but bases on when you reach anaerobic. You are hooked in the mouth and nose and all vitals are taken. I had it done with no repercussions becuAse they will tell you to stop before you reach to the hurt yourself point. Some plp will be done at the time of hooking them up so we would need to come up w something different for the bed redden. Maybe hook them up while in bed.
But was very eye opening mine was stopped way before I would think to stop myself. My AT is 115bpm. 5min time.
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
But this defeats the purpose of such a trial. The purpose of a trial like this would be to test the CBT/GET claims. Modifying it sufficiently to make it safe, using physiological measures, would mean it does not count for the purpose discussed.
I think the basic question is: can we increase the AT with exercise like normal plp can. Then we can do the safe type but for me that is the question. I have seen plp can increase a bit, but we all hit a wall. Every crash sent us back and you have to start all over to build slowly.
Except that sort of CPET isn't verified for much of anything. The maximal one is. Most importantly, a non-maximal CPET result can be claimed to be the result of not trying as hard. That claim cannot be made of a maximal CPET.
Non-maximal CPETs might be useful for helping patients find their limits, but it's of no real scientific value when it comes to proving anything.
I have been meaning to write this for a few weeks.
I wish this PACE issue would get out into the QMUL, KCL and Oxford Student populations via their student unions. Students and their unions usually stand up for social causes and like to protest at injustices. This is a civil rights issue for ME/CFS patients. It would be interesting to see what they think of what this “small vocal minority” of 3 Professors at their universities have been up to over the last few years abusing severely disabled people.
After these few weeks I feel I need to get myself a Twitter account and learn how to tweet although can just about manage reading PR.
For the Twitterati amongst us here are the links in case anyone wants to tweet the Tuller and Coyne articles:
Oxford SU
https://twitter.com/ousunews
QMSU
https://twitter.com/qmsu
It would certainly be a good idea to tweet the FOI refusal to QM Student Union so that they are aware of the amount of legal fees their university is wasting rather than spending it on research or tuition.
KCLSU
https://twitter.com/kclsu
Does anyone think this might be a good idea?
I wish this PACE issue would get out into the QMUL, KCL and Oxford Student populations via their student unions. Students and their unions usually stand up for social causes and like to protest at injustices. This is a civil rights issue for ME/CFS patients. It would be interesting to see what they think of what this “small vocal minority” of 3 Professors at their universities have been up to over the last few years abusing severely disabled people.
After these few weeks I feel I need to get myself a Twitter account and learn how to tweet although can just about manage reading PR.
For the Twitterati amongst us here are the links in case anyone wants to tweet the Tuller and Coyne articles:
Oxford SU
https://twitter.com/ousunews
QMSU
https://twitter.com/qmsu
It would certainly be a good idea to tweet the FOI refusal to QM Student Union so that they are aware of the amount of legal fees their university is wasting rather than spending it on research or tuition.
KCLSU
https://twitter.com/kclsu
Does anyone think this might be a good idea?
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
Yes! Indeed, there may be some students there who have ME.
They definately will be some students with ME there. @harveythecat was a Oxford student who wrote the article in the Telegraph. That is what made me think of this.
If the Student Unions and students become interested in the story they could bring some more pressure onto the PACE PIs. Apart from a small number of good academics (like Coyne) they are a bit risk averse and in sticking their heads out given they are on payroll. However students don't have those conflicts of interest.
They could become our physical presence on these 3 campuses given we are too ill!!!
I was also wondering why no whistle-blowers have come out of those 3 univeristies and the PACE trial NHS employees?? This might be a thought to consider if QMU still refuse the trial data and go to appeal.
- Messages
- 78
- Location
- Manchester, UK
Hi @Yogi - I've actually started thinking about this over the last couple of days and can't believe I didn't think of it sooner. It's a shame I've left now, but I still know quite a few people at Oxford, including people with ME (and there is a growing, vocal disability community.) I will have a think if I can do anything... My particular college Student Union has been v supportive and gave some money to ME charities, people do want to help.
- Messages
- 78
- Location
- Manchester, UK
at the very least could get something in the university newspapers about it
I come up with a lot of ideas lying in my bed but I don't ever execute them. I thought I should put up the idea of this time of tweeting the three student unions for anyone of us on Twitter. I have alot on right now which I am dealing with so have not got round to Twitter yet.
I just thought that the 3 student unions especially QMSU should be made aware of the David Tuller Virology articles.
I just put up the idea for anyone of us on twitter - It wasn't my intention to single you out that you should have to do anything. I hope you don't feel pressured to on my post. Whatever you manage to do in your own time I am sure it will be helpful.
- Messages
- 78
- Location
- Manchester, UK
@Yogi - no worries at all! I didn't think you were doing that 
it's just something I've been thinking about anyway.
it's just something I've been thinking about anyway.
jimells
Senior Member
- Messages
- 2,009
- Location
- northern Maine
What instrument did you play? I'll bet it was brass - a baritone horn perhaps?
(I used to play bari sax - I would very much like to do that again someday)