PACE New Analysis: A long read but cutting... - Ramsays Disease

Ramsays Disease

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PACE New Analysis

Effort profile image
14 Replies

A long read but cutting it short the PACE trial showed no recovery inflating the results published by around four times so they would appear significant.

virology.ws/2016/09/21/no-r...

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Effort profile image
Effort
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14 Replies
CheshireKatz profile image
CheshireKatz

That report shows what was wrong this history gives some reasoning behind the why it was carried out in such a manner.

margaretwilliams.me/2016/pr...

Onceagain profile image
Onceagain in reply to CheshireKatz

Clearly summarises key points margaretwilliams.me/2016/ke...

carch520 profile image
carch520 in reply to Onceagain

Thanks for signposts in the brainfog.

Ian123 profile image
Ian123

The fight back against bad science statnews.com/2016/09/21/chr...

Halflife profile image
Halflife

This deserves as much media coverage as the original trial received.

meaction.net/2016/09/21/pat...

Theresa60 profile image
Theresa60 in reply to Halflife

More media coverage nymag.com/scienceofus/2016/...

Babylon5 profile image
Babylon5

An odd feeling having hoped I will see this day now its here I cannot believe its true.

readerlist profile image
readerlist

Releasing PACE data blogs.bmj.com/bmj/2016/09/2...

Chocminty profile image
Chocminty in reply to readerlist

Protecting identity is a priority over fraudulent misrepresentation of results no really they must try harder than that for an excuse.

Patients consented for this trial in the belief research was important for fellow sufferers not the promotion of theories that benefited the careers of researchers.

Mistymooring profile image
Mistymooring

Great news solvecfs.org/preliminary-an...

Jonesbones profile image
Jonesbones

Any reputation damage for academic science has been earned by ignoring this.

Stormchaser profile image
Stormchaser

Single figure not statistically significant after publishing 60% rates in a journal how can that happen ever sciencealert.com/bad-scienc...

mitty999 profile image
mitty999

I am not surprised. ME for instance shows marked reduction in blood volume, and less mitochondria available to most organs. In order for any kind of attempt to pace exercise is bound to create extra work on the heart which it cannot do. This will at most do no good and likely to cause regression in any treatment. Ban all exercise attempts and teach relaxation instead. Severe ME will react very badly to any extra exercise or even attempt at exercise. Pacing is a dangerous game.

mitty999 profile image
mitty999

I keep telling you. ME is caused by a virus similar to Polio. In fact that was what the doctors in 30s and 40s called it......Variant Poliomyelitis. However it is not, as various specialists have found over the years. But it is an entero virus : very similar to Polio. ME not CFS can cause effects in all organs but the heart is worse as it needs extra energy when we do any kind of "exercise " even reading or talking. I have spent many years working on this and there is a direct link between ME and low Mitochondria : these are tiny sausage shaped organelles found in human cells (in all cellular life in fact ) An organelle is like an organ but very tiny inside cells. These" sausages "have the job of supplying energy like a battery for every cell in your body. ME appears to interfere with the mitochondria stopping your full quota of energy . So when you stand up and /or do exercise you only have a very limited amount of extra energy to draw on. Then when it runs out your body will "scream " in a way and you feel terrible. You are trying to draw on energy which you have used up. Ant attempt to force the body on will only make the matter worse, sometimes very badly affected : requiring maybe days in bed recuperating. The more you do the worse it gets .

There is a mountain of really important research done on The Hummingbird Site. Or rather the scientists do so much work shown online.

You may have CFS but be certain CFS is not a disease , it is a symptom found in ME and lots of other diseases. Some people will insist that they are the same illness in order to save money.

ME is more common than Breast Cancer !!! And it is contagious too.

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