Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

Er, there is this chap called John Edwards quoted in the Buzzfeed piece a bit. I didn't see any US researchers mentioned.

Yes, @Jonathan Edwards. Thank you for your contribution to the Buzzfeed article, and the other statements you have made in support of pwme. They are always very welcome, and I should have recognised them.

I do remember one that was something to the effect that you are retired whereas other researchers are still dependant on the UK research system for career progression which is a concern for them. The treatment of Keith Geraghty is a case in point.

I am wondering however why 2 UK charities are still working closely with Esther Crawley within the CMRC. I can see no reason for them to do this. The " in the tent" argument has imho produced no benefits for pwme.
 
I didn't say i want to be famous but people seeing what life with ME/CFS is like seems to be more effective then medical advocacy
Jen Brea is doing a fantastic job of bridging the gap between PwME and the wider community, and helping A. N. Other to see how very badly the BPS science club have been bullying PwME, and manipulating the ME agenda. She is indeed awesome.

David Tuller is also fantastic. Completely different style, helping build different bridges more focused on the scientific debate. With the active involvement/support of some great advocates and scientists.

Two very different people, both dedicated to the same cause, and both very effective in their own complementary ways. A two-pronged approach that could bode well for 2018.

EC really should not have p*ssed them both off (from her point of view that is).
 
I didn't mean you specifically, just the general you, as in: one should be careful what one wishes for...
You will get no argument from me, i am very thorough but one can't predict the future.
That said i am reminded of the expression Fortune favours the bold. When you want to achieve great successes you have to take strong (well thought out) action
 
Jen Brea is doing a fantastic job of bridging the gap between PwME and the wider community, and helping A. N. Other to see how very badly the BPS science club have been bullying PwME, and manipulating the ME agenda. She is indeed awesome.
Indeed, she has hit a needed lever here, public awareness and education as advocacy.

David Tuller is also fantastic. Completely different style, helping build different bridges more focused on the scientific debate. With the active involvement/support of some great advocates and scientists.
I noticed that too, he is amazingly good at tearing down alternative facts (also known as lies).

Two very different people, both dedicated to the same cause, and both very effective in their own complementary ways. A two-pronged approach that could bode well for 2018.
Very true, though we need more prongs, as many as we can muster.

EC really should not have p*ssed them both off (from her point of view that is).
So far she is made of teflon, she has done more harm to ME/CFS patients then we have been able to undo, but the battle is not over, we need to penetrate that teflon and discredit her in the public eye. If quackery and lies are shunned whats left is science. Not easy or quick but it needs to be done.
 
Favorite observation from the article:
He [Professor Edwards] claims the SMILE trial’s results also undermine the PACE trial – which also used an unblinded trial with subjective outcomes – by showing that "the same techniques can get you the same answer for a completely quack therapy based on complete nonsense like standing on pieces of paper and telling your disease to stop”.
 
I think it must have to do with sources of funding and having paid staff.

I think the MEA only funds through donations, sales and membership fees. They don't have any government funding. Don't know about AfME.

Edit to add:
It is up to MEA members to write to the organisation board to request exit from the tent - I have done so, but unfortunately most members are likely to be completely unaware of the situation, as I was until I joined PR.
 
How about we all unlike loads of your posts!!!!

I was being serious :P

If I get loads of likes, (like I did for the original post) it makes it harder for me filter messages.

I don't want to miss someone asking for help as I whiz through a long list of 'likes'.

I know this sounds spectacularly ungrateful, but If I turn my like notifications off I miss whether a useful post has been liked or understood by someone needing help.

Please someone steal my post :emoji_warning:

(If it's hard to format pm me and I'll send you the bbcode version)
 
I completely sympathise @Luther Blissett - I had to turn like notifications off because foggy brained me kept missing alerts I needed to respond to.
I hope we can revisit ideas for changing the alert notifications at some stage in the future - having them colour coded or having a separate tab for like alerts might help.
But this is off topic, I'll give myself a stern talking to.
 
If I get loads of likes, (like I did for the original post) it makes it harder for me filter messages.

I don't want to miss someone asking for help as I whiz through a long list of 'likes'.

It's interesting hearing about how people use the forum in different ways. I confess I rarely look at my alerts. And I don't trawl through to see who liked what. Life's too short. I just look at threads I'm following and new threads.
 
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