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Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Jonathan Edwards said:
News has to be NEWS.
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Yes. Proven biomarkers leading to diagnostic tests, proven treatments, proven scientific fraud are needed. Most events we consider to be landmark events wont make a wave. They are important to us not the general community. We need bigger things, and its the science that is most likely to deliver.

However this is a long game for us. Even minor things can make minor impact, and bit by bit that impact might accumulate. This is about educating everyone, and I include ourselves in that.

Once these things happen then the personal interest stories will become more important and have bigger impact.
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
A.B. said:
This kind of bad science threatens everyone, not just ME/CFS patients.
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Bad medical science is tragic. Allowing, promoting and using bad medical science should be alarming. If such things go unnoticed and unchallenged it is fair to ask what else is going wrong, and who is being harmed, and what is it costing the public? This very much goes beyond ME or CFS.
 
JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
alex3619 said:
Of concern is that a number of my comments on the article are either hard for me to find or missing. They claim the comments are unmoderated, but if so where are my comments? They were there once.
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I had a look through them and saw three comments from you. There is a set of tabs at the top of the comments and it was defaulted at Newest but there was an option to load all comments or something like that. Ironically I couldn't find my own comment though and when I went back to check the tabs I didn't seem to have that option displayed again. I took screenshots of your comments if you want them btw
 
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Barry53

Senior Member
Messages
2,391
Location
UK
Jonathan Edwards said:
I think there is a problem with crowdfunding an investigative journalist in the UK because the targets will just turn around and point out that the patients are so malicious they even put private spooks on to you. And the public is quite likely to swallow it. David is fine because he started off on his own initiative. There are some investigative journalists in the wings who might come on board but I think it would be best if it is their initiative too.
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Exactly my concern. David Tuller is a bit of a special case (very special actually), bit I think crowd funding journalists as a general strategy would just lead to credibility issues.
 
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Barry53

Senior Member
Messages
2,391
Location
UK
alex3619 said:
Of concern is that a number of my comments on the article are either hard for me to find or missing. They claim the comments are unmoderated, but if so where are my comments? They were there once.
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If you select "View All" then do the usual web browser Ctrl-F find, and search for "alex3619", it shows 3 hits that you can search through.
 
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Barry53

Senior Member
Messages
2,391
Location
UK
JoanDublin said:
I had a look through them and saw three comments from you. There is a set of tabs at the top of the comments and it was defaulted at Newest but there was an option to load all comments or something like that. Ironically I couldn't find my own comment though and when I went back to check the tabs I didn't seem to have that option displayed again. I took screenshots of your comments if you want them btw
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See my comment above for @alex3619, which may help you find your comments also.
 
A

anni66

mum to ME daughter
Messages
563
Location
scotland
traction on public awareness / interest may be more easily achieved by spotlighting the situation with children - historically this has effectively been state sponsored child abuse and the general public would find it horrific. Forced treatments are still going on and permanent damage is a consequence. When i printed out " the strange tale of Amy Brown" from health rising i did an extra copy for people at work to read- truth is stranger ( and stronger) than fiction.
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Barry53 said:
If you select "View All" then do the usual web browser Ctrl-F find, and search for "alex3619", it shows 3 hits that you can search through.
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Yes, but I have written more than half a dozen.

PS I also used the show all tab. In fact there are messages I replied to I recall specifically and my reply is gone.
 
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Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
daisybell said:
This study is a doozy.. 120 potential participants, 12 started the study and 8, yes that's 8, completed it....
Anyone got alarm bells ringing yet....
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It's the expectation that subjective outcomes are sufficient that rang the alarm bell...

If their followup trial doesn't include objective outcomes then it is a complete waste of time.

Although the statistical power of this study was limited, there was significant improvement in fatigue severity.
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13 separate comparisons, so correcting for multiple comparisons (p<(0.05/13)), none of the findings were significant. It's an n=8 feasibility study without a control group, claims about statistical significance are simply nonsense.

Oh and Malcolm McLeod recently reweeted Neuroskeptic's "Should we ever conduct underpowered studies?" blog post, so he knows these claims of statistical significance is nonsense!
 
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A.B.

A.B.

Senior Member
Messages
3,780
Snow Leopard said:
It's the expectation that subjective outcomes are sufficient that rang the alarm bell...

If their followup trial doesn't include objective outcomes then it is a complete waste of time.
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I think objective outcomes will either be absent of de-emphasized in favor of subjective ones. The authors view these symptoms as psychosomatic and objective abnormalities would go against their beliefs. In the case of Chalder emphasizing objective outcomes would also be akin to admitting that PACE was flawed.
 
Stewart

Stewart

Senior Member
Messages
291
alex3619 said:
Yes, but I have written more than half a dozen.

PS I also used the show all tab. In fact there are messages I replied to I recall specifically and my reply is gone.
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Try having a look at the comments using a mobile device (if you have one). On Wednesday I noticed that a couple of replies that I remembered reading seemed to have disappeared when I browsed through the comments on my PC. Later in the day I looked again using my smartphone - and the comments that I hadn't been able to find earlier were still there.

I think that - for reasons I don't pretend to understand - on the full 'desktop' version of the page it only seems to display two replies under each comment, making it look like any additional replies have been removed.
 
Stewart

Stewart

Senior Member
Messages
291
Stewart said:
Try having a look at the comments using a mobile device (if you have one). On Wednesday I noticed that a couple of replies that I remembered reading seemed to have disappeared when I browsed through the comments on my PC. Later in the day I looked again using my smartphone - and the comments that I hadn't been able to find earlier were still there.

I think that - for reasons I don't pretend to understand - on the full 'desktop' version of the page it only seems to display two replies under each comment, making it look like any additional replies have been removed.
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I've just had a quick look on my iphone, and I can see six comments from you @alex3619. I may have missed one or two...
 
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