2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

jnmaciuch said:
Hugs. It’s so frustrating, isn’t it. At best you’re treated like a novelty who’s there for the superficial “social awareness” quota of “respecting lived experience.”

Not like you’d have anything useful or productive to say on the actual science.
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I was thinking about clinicians focusing on the importance of mental health of their patients when going to work today, how practical help (and/or better economy) would help more than being sent to CBT. But there is no system for patients to tell clinicians so (especially not after the potential initial happiness of believing you'll get any useful help).

But my personal experience, and the experience of other sick/disabled people I know, is seen as anecdote. While their own clinical experience that this helps is somehow valid. With some actually believing that patients not coming back means they have recovered not simply given up/changed provider in the hope of getting actual help. Then there are the people who think I am the(ir made believe) classic fatigue patient: I just thought I was ill. Obviously I'm not since I'm working (or when I was a student: studying). No accomodations for you!
 
Midnattsol said:
Obviously I'm not since I'm working (or when I was a student: studying). No accomodations for you!
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God, same. “Obviously you’ve harnessed the power of positive thinking to “overcome” your illness. What do you mean you can’t take 4 classes and work for 12 hours straight? Yes I know you have an illness but obviously you’re one of the good ones who can power through it so…”
 
Principles and values, generic meaningless promotional marketing material, who can even tell the difference these days? Almost every word of this is a lie. They value none of this, and act the opposite.

What is the best place to write a firm but polite message telling what I think of their hollow principles and blatant hypocrisy? I don't see the general contact form being any useful here.
 
Cochrane have rejected both the S4ME appeals about their inadequate responses to two separate complaints.

Science For ME said:
Received by email 29th April 2025:
___________________

Decision on Appeal #COMP00196177

Dear Trish Davis,

Thank you for sharing your concerns and for your patience while we investigated this matter.

We have now assessed your Appeal #COMP00196177, submitted on 26th February 2025, regarding the decision to close Complaint #COMP00192844. After careful consideration, we have decided to uphold the decision on Complaint #COMP00192844.

We understand that you may be disappointed by this decision, but our assessment concluded that the handling of the complaint strictly followed standard Cochrane processes and policies.

Please note that, based on the above, we will now close this appeal. You will receive a separate email from the Complaints team closing the corresponding ticket.

Kind regards,

Cochrane Complaint Appeals Boards

________________

Decision on Appeal #COMP00198863
29/04/2025 15:40

Dear Trish Davis and Maree Candish,

Thank you for sharing your concerns and for your patience while we investigated this matter.

We have now assessed your Appeal #COMP00198863, submitted on 26th February 2025, regarding the decision to close Complaint #COMP00195461. After careful consideration, we have decided to uphold the decision on Complaint #COMP00195461.

We understand that you may be disappointed by this decision, but our assessment concluded that the handling of the complaint strictly followed standard Cochrane processes and policies.

Please note that, based on the above, we will now close this appeal. You will receive a separate email from the Complaints team closing the corresponding ticket.

Kind regards,

Cochrane Complaint Appeals Boards
_________________
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It surely can't be a coincidence that they reached their decision within a couple of hours of me sending reminders and asking for a progress report on each appeal.

This was always going to be the outcome. Nobody at Cochrane has a clue about ME/CFS or seems to care about patients, it's all a big pretence.
 
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