Petition: Opposing MEGA

[batteredoldbook]

Being stuck halfway out of the door in terms of advocacy is an interesting vantage point. As an M.E patient I understand exactly the reasons why some people with M.E are justifiably angry and frustrated with their treatment from medicine. Conversely, from outside looking in, I see M.E advocates being highly disrespectful to doctors and hurling abuse at their fellow advocates. I think this is just awful behaviour. I find it humiliating to be associated with it. I left M.E advocacy specifically to distance myself from it.

Prof. Coyne sending an image of a police dog attack to Sir Simon Wessely might have provided some degree of satisfaction to bad feeling within the M.E community but from the outside looking in - it looks (and is) wild and immoderate - most especially when the action is tolerated and left unchallenged by well known advocates. Likewise the impossibility of reporting disrespect without being labelled disrespectful and the smothering silence on the whole issue within M.E leave me depressed and disconsolate.

So, while I would still like Charles Shepherd to address Prof Holgate's behaviour towards 200 M.E advocates, (who merely wanted to express valid concerns about the composition of the MEGA team), I can understand why neither would want to show any chink in their armour. M.E can be a truly hostile environment to work in - who would dare show weakness here?

My message to all is that abusive behaviour (and silence on the issue) from the M.E community is, I believe, a factor that is keeping us all ill. Over and over I say: "People with M.E should not mistreat others and should stand together against mistreatment."

The one thing you should never tolerate is intolerance. It is not abusive of me to report abuse; it is not disrespectful of me to challenge disrespect. It is not unkind, unhelpful or disloyal of me to challenge the M.E community, its leaders and my friends to behave in the exact same manner that they demand from medicine.

 

[Esther12]

I disagree. Campaigns of such "pushing" can look a lot like bullying, and have the effect of discouraging the targets and bystanders from staying involved in advocacy.

I agree with your second sentance, but trying to prevent that risks leading to this sort of loop:

You write above that you don't like "attack-other-advocates mode" but then block and attack me for reporting multiple examples of it. I don't understand. If bullying and abuse is wrong, why not join me in saying that Prof Coyne's behaviour towards multiple M.E advocates was wrong?

It just seems to me like this sort of thing is an inevitable part of different people having different priorities and different ideas about where the lines between advocacy/pushing/bullying/abuse are.

I'm supportive of people trying to push Action for ME to be less rubbish, and I've seen people who are a part of that organisation complain about 'bullying' over what seem to me to be the mildest of things. We've seen how some medical researchers try to present all sorts as 'harassment'. I prefer to focus on problems where authority figures are misusing their power over others, and I'm not really concerned about individual advocates trying to apply pressures in ways that they think are helpful, whether I disagree with them or not.

For a lot of these things, I'm not really sure where I stand on exactly when it is un/acceptable to push people to behave differently to how they want. One reason for being a bit hands-off is that I fear I'd self-servingly attempt class attempts to change my behaviour as bullying, while wanting to maintain my right to put pressure on others!

The one thing you should never tolerate is intolerance.

What about child abuse?

Sorry for taking the OMEGA thread OT.

 

[batteredoldbook]

What about child abuse?

Child abuse is assault (extreme-intolerance) directed towards children and should obviously not be tolerated.

I'm supportive of people trying to push Action for ME to be less rubbish, and I've seen people who are a part of that organisation complain about 'bullying' over what seem to me to be the mildest of things.

Action for M.E are the co-creators of Pace. I tried to find out whether they still thought Pace was good science and was called a string of names by supporters while I did so. I asked their CEO whether this behaviour was appropriate but received no reply.

It just seems to me like this sort of thing is an inevitable part of different people having different priorities and different ideas about where the lines between advocacy/pushing/bullying/abuse are.

Where we choose to use a fluid as opposed to fixed definition of abuse, we end up free to challenge or turn a blind eye towards any behaviour (or any people) we like. We can end up using words with clear meanings: eg: "harassment, abuse, bullying" when they are politically convenient rather than when they are apt and true. This can lead to damaging bias & favouritism. I think to the outside observer language such as "Asshole, "sick, crazy", f*ck yourselves" or the photo of the police dog are unambiguous examples of abuse & disrespect. I think such behaviour plays into the hands of those who wish to vilify M.E patients as "extremists" but more fundamentally, I just think it's no way to treat another human being.

Unbelievably, despairingly, I think fundamental issues such as "What constitutes abuse?" and "What's constitutes good science?" are on-topic for discussions of MEGA because without some constant frames of reference we're all just bobbing up and down bumping into each other like flotsam.

 

[Esther12]

Child abuse is assault (extreme-intolerance) directed towards children and should obviously not be tolerated.

Can't that sort of thing just lead to one classing whatever one does not want to tolerate as 'intolerance'?

Personally, I'm pretty casual with sweary language in the off-line world, and forget that there are people who genuinely see that sort of thing as 'abusive' language. The only reason I'm careful on-line is that I don't want to do things that could end up being used against other patients.

 

[batteredoldbook]

Can't that sort of thing just lead to one classing whatever one does not want to tolerate as 'intolerance'?

I tried to cover this in fluid/fixed discussion above.

Personally, I'm pretty casual with sweary language in the off-line world, and forget that there are people who genuinely see that sort of thing as 'abusive' language. The only reason I'm careful on-line is that I don't want to do things that could end up being used against other patients.

I'm a big fan of swearing in general however swearing at people is abuse. In fact it's the definition of abusive language.

When I used to advocate in the late 90s and early 2000s I replied to 1000s of emails and received zero abuse from pwme. In recent years however, I've repeatedly experienced abusive language directed towards myself, I've seen disrespect & abuse being hurled at doctors & other advocates. And when I tried to raise the issue I was met with a wall of silence from well-known advocates and with charges that I was somehow abusive, disrespectful, time wasting or whatever for trying to raise and deal with the issue. Hence I chose to stop working as an M.E advocate. After 30yrs ill I just don't need disrespect, rudeness, abuse, & intimidation in my life. I also believe that poor M.E community behaviour will have the effect of prolonging the time it takes for us all to find good treatment for our disease - (though in the interests of balance I do have to add that I also received public abuse from medicine).

 

[Esther12]

I tried to cover this in fluid/fixed discussion above.

One reason why I think that didn't work is that you seemed to be assuming some words and concepts have clear meanings when their understanding is actually hugely contested. People using those terms in different ways might not just be attempting to manipulate language in politically convenient ways, but instead have genuine and deep disagreements about what sort of behaviour is acceptable in different contexts.

I'm a big fan of swearing in general however swearing at people is abuse. In fact it's the definition of abusive language.

I don't think I ever find language abusive, other than when it is being used as a part of a misuse of power, and then it really doesn't matter how politely someone phrases what they are saying. People on the street hurling insults at me is not a problem so long as it doesn't go beyond that (which is lucky... I live in a rough area).

I agree that advocates behaving in over-the-top or aggressive ways is likely to make things harder for the rest of us. Personally, I don't fancy spending my time trying to control people on the internet though - there are more important things to be using my limited time and energy on.

 

[batteredoldbook]

One reason why I think that didn't work is that you seemed to be assuming some words and concepts have clear meanings when their understanding is actually hugely contested. People using those terms in different ways might not just be attempting to manipulate language in politically convenient ways, but instead have genuine and deep disagreements about what sort of behaviour is acceptable in different contexts.

I don't think I ever find language abusive, other than when it is being used as a part of a misuse of power, and then it really doesn't matter how politely someone phrases what they are saying. People on the street hurling insults at me is not a problem so long as it doesn't go beyond that (which is lucky... I live in a rough area).

I agree that advocates behaving in over-the-top or aggressive ways is likely to make things harder for the rest of us. Personally, I don't fancy spending my time trying to control people on the internet though - there are more important things to be using my limited time and energy on.

Abuse is defined both in the dictionary and in law. Try using the words I reported to a policeman if in doubt.

As to misuse of power, I definitely agree that this is a huge part of the problem here. However, those who misuse power, people whose behaviour pwme might need to control, influence or change would likely not want to acknowledge the issue. When challenged, they could simply say they had no clear meaning of the word "misuse" and that everyone's viewpoint had to be respected.

Anyway. In summary I think the way patients and doctors are treating each other is helping to keep M.E patients ill for longer. I think MEGA was founded on a clear disrespect of the concerns of 200 M.E patients. I think community acceptance of disrespect towards doctors & other advocates is a problem especially now you're losing advocates as a direct result of it.

Will check my MEGA question again but am looking to bring convo to a close.

 

[Esther12]

Abuse is defined both in the dictionary and in law. Try using the words I reported to a policeman if in doubt.

'Justice' is in the dictionary too, but it's still a term thats use is highly contested. There's a lot of variation in how the law approaches speech too. I prefer America's approach to speech to the UK's.

In summary I think the way patients and doctors are treating each other is helping to keep M.E patients ill for longer. ... I think community acceptance of disrespect towards doctors & other advocates is a problem especially now you're losing advocates as a direct result of it.

I think that some disrespect is wrong, and some is justified. There are people out there who really don't deserve to be treated with respect.

Will check my MEGA question again but am looking to bring convo to a close.

Cool.

 

[batteredoldbook]

'Justice' is in the dictionary too, but it's still a term thats use is highly contested. There's a lot of variation in how the law approaches speech too. I prefer America's approach to speech to the UK's.
I think that some disrespect is wrong, and some is justified. There are people out there who really don't deserve to be treated with respect.

I hope doctors and M.E patients can work something out, otherwise the issue will end in court cases.

 

[AndyPR]

3,149 signatures

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Undisclosed]

This thread has become off-topic at times please keep on topic re: the MEGA petition.

Thank you.

 

[AndyPR]

We vote 'no confidence' in MEGA research for M.E.

A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding. The ME "expert" is still Esther Crawley and the Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.

3,149 signatures

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[AndyPR]

>We vote 'no confidence' in MEGA research for M.E.

>A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding. The ME "expert" is still Esther Crawley and the Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.

3,158 signatures

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[AndyPR]

Esther Crawley, the ME "expert" of MEGA, lecturing today on how to deny Freedom Of Information request

and "explaining" how campaigns, presumably including petitions, are anti-science.

https://twitter.com/i/web/status/857984679626113024

Sign the petition to oppose MEGA https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
3,166 supporters.

 

[dangermouse]

It's actually scary that EC has any involvement with MEGA. How are pwME supposed to have confidence in a trial that EC has such influence in?

 

[AndyPR]

It's actually scary that EC has any involvement with MEGA. How are pwME supposed to have confidence in a trial that EC has such influence in?

In my opinion they can't. She would have to leave MEGA for me to then consider supporting the project, but then I tend towards the militant and vexatious side of things.

 

[batteredoldbook]

It's actually scary that EC has any involvement with MEGA. How are pwME supposed to have confidence in a trial that EC has such influence in?

Hundreds of M.E patients tried to raise similar concerns with Prof Holgate but to no avail. I've concluded MEGA is medical selective deafness & denial repackaged.

 

[AndyPR]

>We vote 'no confidence' in MEGA research for M.E.

>A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

In addition

• They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding.
• The Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.
  
• The ME "expert" is still Esther Crawley, who now gives lectures on how to deal with "anti-science" patients, with this petition as a main piece of "evidence", and on how to deny data release.

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

3,174 signatures

 

[Jo Best]

https://twitter.com/i/web/status/858686912613240832

 

[Jo Best]

https://twitter.com/i/web/status/858618116682723328