The actual views of "ME activists" are...

After yet another round of news articles misrepresenting the views of "ME activists" can someone please point me at some actual views.
Either individual patients or links to charities' / organizations' views.

Alternatively, what do you see as the most common views of ME activists? Maybe the top 3?
(I have some ideas but wonder if others have different perspectives.)

I am not sure if ME activists is the same as ME advocates - is there a difference or is one just media slang for "people accused of complaining about dreadful biopsychosocial research"?

(bear in mind if posting your own personal views here that they might end up in print if journalists later see the thread since it's a public post, perhaps I'm being too hopeful though since usually they publish what supporting researchers claim our view is, apparently all activists share just ONE view according Kate Kelland, Rod Liddle, the Science Media Centre, and the like)

 

I'm not sure there is much risk of anyone's views appearing in print. There is however a very real risk that sentences selected at random from what is written might appear with a poster's name associated with it.

 

There are only ME inactivists. If activists existed, we would have won long ago.

 

that was my concern too

 

That's harsh. There's a major imbalance of power here - activists do not control funding amounts, what is funded, what criteria is used for research, treatment guidelines or training for professionals - those that do overwhelming portray ME as a fatigue condition only or dismiss the significance.
If there are no activists - or they are ineffective - then why the campaign to smear them? Why the increase in media attacks since the PACE trial main outcome was published?

I was going to post this later but do some of these names / campaigns ring a bell?

Alem Matthees (Australia) got the PACE data released. At great cost to himself.

Ron Davis and Janet Dafoe (US) do a great deal - when Ron couldn't get any government funding for biomedical research he found another way and setup his own centre. Janet does advocacy and Millions Missing as much as can be fitted around caring for Whitney.

Greg Crowhurst's (UK) engagement with the NICE guidelines and publishing emails from the NICE director are crucial. He also couldn't find any research on ME and paralysis so did a survey and published it. Also wrote a guide on nursing those with severe ME.
Robert Courtney's detailed analysis of how the Cochrane review of exercise didn't meet Cochrane's own standards was excellent - the exercise data was retracted (no decision on the rewritten review yet - sadly he died).
Tanya Harrison of BRAME was the only patient on the NICE guideline development group willing to stand up against the 2007 NICE guidelines that promoted only CBT and GET by resigning from the development group at the list minute when they refused to allow her to state she disagreed with the guidelines.
Dr Sarah Myhill is currently seeking judicial review of the GMC decision to not even bother to investigate the PACE trial authors. Fear of GMC investigation may have been factor in Peter White's early retirement from clinical work, and Michael Sharpe tweeted about GMC complaints about him last week.
David Tuller has helped engage many more scientists and professionals in ME research and questioned the lack of ethics review for several of Esther Crawley's research publications.

Tom Kindlon (Ireland) has published more science than any other patient including this week's rebuttal to Michael Sharpe and the PACE trial re-analysis with Carolyn Wilshire and a number of others.

Denmark just re-classified ME and it's no longer a mental illness. Don't know who / which groups helped but it didn't happen by itself.

The open letter to the Lancet to retract the PACE trial has over 12,000 signatures. The ME Association petition for a review of the NICE guidelines reversed the decision to not review for another 10 years - over 10,000 signed in just a few days.

 

I think Hilda Bastian (PLOS ONE blog) and Carol Monaghan (The ME Show interview) summarise ME activists' views pretty well. They want better science and realistic care.

 

Fat chance!

Suffolk CCGs this week......https://www.eadt.co.uk/news/suffolk-ccgs-improving-access-to-psychological-therapies-1-5955640
£2.6million NHS cash for Suffolk to target link between mental and physical health

• Andrew Papworth
• andrew.papworth@archant.co.uk
• @andrew_papworth

PUBLISHED: 05:16 25 March 2019 | UPDATED: 16:14 25 March 2019



Interesting comment about reporting....
IheardYouWhisper966 • 2 days ago
Earlier today this article was referring to the dangerous link between mental and physical health. Perhaps the Archant scribbler has since been advised to tone down his unnecessary, and sensationalist approach to mental health...

 

It was a joke. I should have added a smiley. If patients weren't so sick they would have been able to change the system long ago.

 

This is what activism looks like in my mind

 

Oops!! Michael Sharpe's deleted tweet questioning how ill people really are was particularly cutting because of that (the one that drew objections from Alem Mattees' family)

 

Early this month, Danish MPs voted in favour of an amendment that ME should be separated from Functional Disorders.

Unless and until the Danish health authorities have agreed to and implemented this, I think it is an overstatement to say that:

"Denmark just re-classified ME and it's no longer a mental illness."

I've seen similar overstatements being made on Twitter by academics with an interest in ME.

 

Doesn't Denmark have an obligation to follow the WHO's ICD classification? Which explicitly excludes ME/CFS/PVFS from that category?