Forward ME Group minutes from meeting 7th February 2018

Really fascinating and heartening to read the minutes of the meeting and learn about the efforts ongoing regarding the review of NICE guidelines. It gives me hope.

Some excellent observations made within the minutes and notes, including the need to call ME what it is: ME.

I should note I am not surprised The Times didn’t publish the letter. It was, to me, a letter that wouldn’t mean anything to a lay reader so stood little chance of publication. Always important to match message with medium.

Thanks, again, for sharing here. Greatly appreciated.
 
From their letter to the times:

Despite incontrovertible evidence of disabling metabolic abnormalities in their muscles
Click to expand...

That sounds too strong to me. What does anyone else thing?
 
8.1 Proposed letter to the Times. Dr Weir handed out a revised copy. Charles Shepherd commented that the Times was unlikely to accept more than 200 words. Dr Weir said the purpose was twofold; first to increase public knowledge and secondly to provoke response. He referred again to the incontrovertibility of muscle biopsies.
Click to expand...

So I wonder which 3 papers he is refering to here:

4.5 Dr Weir said that the three most convincing papers on the biomedical nature of the condition, which psychiatrists cannot refute, including that on anaerobic thresholds, all use the term “CFS”.
Click to expand...

2 day CPET paper? And?
 
Gary Burgess said:
I should note I am not surprised The Times didn’t publish the letter. It was, to me, a letter that wouldn’t mean anything to a lay reader so stood little chance of publication. Always important to match message with medium.
Click to expand...
Agreed. All that counts is effective communication; if it's ineffective it's a total waste of time and effort. I think of communication as a transmitter sending information to a receiver, and the receiver getting from the information what the transmitter intended. To me, communication is only achieved if all the following apply:
  1. The transmitter successfully sends some information.
  2. The receiver successfully receives the same information, uncorrupted.
  3. The receiver processes the information, and understands the transmitter's interpretation.
I think that for ME advocacy, '3' is the one that needs advancing, because it is a total waste of energy and hope, transmitting inappropriate information to audiences you need to win over. Not surprisingly, a great deal of science-focused advocacy has been and is being done - and don't misunderstand me, must continue because it is vital.

But I think we need to broaden who we enlighten, especially as now is probably a really good time, with Unrest, NICE guidelines overhaul, Carol Monaghan's political initiative, and Sarah Myhill's GMC initiative ... and yours. The pressure is on the Wessly'ites from increasingly more and more quarters, and the more keeps on expanding the better.
 
Esther12 said:
From their letter to the times:
'Despite incontrovertible evidence of disabling metabolic abnormalities in their muscles'
That sounds too strong to me. What does anyone else thing?
Click to expand...


Agreed, I think this is far too strong. I worry that Forward ME are tending to overegg the biological evidence. Maybe fortunate it was not published. I certainly think it would have been incomprehensible to most people.
 
"Dr Weir said that the “D” IN SEID stood for “disorder” – an unspecific term..."

Not that I like the name, but the 'D' stands for 'Disease'.
 
You must log in or register to reply here.
Back
Top Bottom