Petition: Opposing MEGA

[batteredoldbook]

Again, @charles shepherd pls see my question above.

Checked back in to see if this question had ever been answered but can't see anything. It was a very good question. Best wishes all.

 

[batteredoldbook]

I am proud of the questions I ask. I ask good questions. Looking back on my time as an M.E advocate I see there is a common thread. For me to bother either myself or the person I'm asking, I have to strongly believe that people are being disrespected or even mistreated (or there is a danger of this in the future).

To be fair to Dr Shepherd & the M.E Association; I have also tried and failed to raise issues with the Simpsons/Invest, Action for M.E, The Lancet, CMRC and a raft of other M.E charities and advocates. In all cases the cost to me has been time.

I've decided that I don't need to watch MEGA play out, its flaws are obvious. Just as I don't need to watch PWME turn their victory with PACE into mistreatment of medicine. I leave advocacy in opposition to many groups and individuals and this is a sad thing.

I've written an open letter to Tom about abuse in M.E. http://pwme.org/tom.html

 

[Valentijn]

I am proud of the questions I ask. I ask good questions.

I disagree. In fact, you're one of the very few people I have blocked. I check new content from people I'm blocking from time to time, to see if they're still in attack-other-advocates mode, and unfortunately it looks like you are.

For me to bother either myself or the person I'm asking, I have to strongly believe that people are being disrespected or even mistreated (or there is a danger of this in the future).

You're disrespecting an ME patient and advocate by demanding an answer which he doesn't want to give. And since he lives in the real world where he has to work with people he doesn't always agree with, it's quite understandable that he doesn't give in to your demand that he either badmouth someone or express support for them. Reality is much more nuanced.

Goodbye for a few more months.

 

[batteredoldbook]

I disagree. In fact, you're one of the very few people I have blocked. I check new content from people I'm blocking from time to time, to see if they're still in attack-other-advocates mode, and unfortunately it looks like you are.


You're disrespecting an ME patient and advocate by demanding an answer which he doesn't want to give. And since he lives in the real world where he has to work with people he doesn't always agree with, it's quite understandable that he doesn't give in to your demand that he either badmouth someone or express support for them. Reality is much more nuanced.

Goodbye for a few more months.

The M.E community complains of vilification by the medical community yet tolerates (and even supports) the public demonization of patients (and doctors) by well known M.E advocates. I think this contradiction needs addressing and have asked Tom to look at it. I think medical and M.E communities should be held to the same high standards of conduct.


If vilification is wrong then it is wrong when medicine does it and it is wrong when M.E advocates do it too.

 

[Esther12]

Personally, I'm not concerned by one advocate trying to push other advocates to get involved in some issue they don't want to. It's obvious to everyone that no-one can be forced to comment on things that they don't want to, and that different people want to do different things. That just seems like a normal part of the free exchange of ideas.

I'm not really bothered by lots of the internal politicking/'vilification'/whatever that goes on within advocacy. I think that there are more important things to focus on, but clearly we all make different judgements on things like that. We all have diffferent views on what sort of advocacy is productive, what's destructive, and what is the most important thing to prioritise. I think it's good to have different people trying to contribute in different ways, but I also think it is worth taking time to occasionally consider 'what have I achieved?' or 'how does this compare to what other approaches have achieved?'

 

[batteredoldbook]

We all have diffferent views on what sort of advocacy is productive, what's destructive, and what is the most important thing to prioritise. I think it's good to have different people trying to contribute in different ways, but I also think it is worth taking time to occasionally consider 'what have I achieved?' or 'how does this compare to what other approaches have achieved?'

I agree there are many approaches to advocacy. But there is also a line where advocacy breaks down into abuse and starts to cause harm. I think some M.E advocates have crossed that line.

To be fair on this, I also believe many in the medical community are behaving poorly. This is why I asked Dr Shepherd about Prof. Holgate's response to advocates' MEGA concerns.

I believe respect is fundamental. I think addressing this issue will do more to help solve the M.E crisis than awareness or even science.

 

[A.B.]

@batteredoldbook I can tell you why I personally don't feel inspired by your call to end abuse. There are no names or details given (with the exception of Coyne). You cannot expect any support if no details are given. As for Coyne, I think portraying him as abuser is misleading. Yes, his behaviour over a short period of time was inexcusable and abusive, but that was the exception, not the norm. If I remember right, the background for this was that Coyne did not like that the NIH was being attacked by some advocates. His behaviour was abnormal and there were probably some reasons for that which will remain invisible to us. I see little reason to dwell on that because it hasn't repeated and he's clearly trying to help us, in his own way. There seems to be no ongoing problem as far as Coyne is concerned.

You could probably call some of my posts abusive towards some researchers. I don't disagree, but context matters and these posts are taking place in the context of a scandal where patients are receiving far more abuse than they are dishing out. Just because this abuse is not taking place on a verbal level doesn't mean it's any better, indeed, the medical neglect and promotion of poor science of patients is far more abusive than mere words. In my opinion expressing anger and frustration must be allowed.

 

[Esther12]

I agree there are many approaches to advocacy. But there is also a line where advocacy breaks down into abuse and starts to cause harm. I think some M.E advocates have crossed that line.

To be fair on this, I also believe many in the medical community are behaving poorly. This is why I asked Dr Shepherd about Prof. Holgate's response to advocates' MEGA concerns.

I believe respect is fundamental. I think addressing this issue will do more to help solve the M.E crisis than awareness or even science.

But even there, different people have different ideas about what respect mean. I can see how some people would see your advocacy as being disrespectful to advocates who have decided to prioritise different areas to yourself.

I'm often critical of other peoples advocacy, sometimes very bluntly, and that can seem disreprespectual. There was a time when lots of people were campaigning to have me thrown off this forum because they didn't like the way I posted.

I know that 'respect' is really important to lots of people, but it's not to me. tbh, sometimes people treat me with a lack of respect and they're right to do so, because I can be an idiot and mess things up. Generally, I don't really care if people wrongly treat me without respect either, so long as they don't have power over me. The misuse of power is much more of a concern to me than 'respect', and that's why I think we should focus on fighting against the problems occuring within the institutions who have the most power over how patients are treated. There are enough serious problems there to keep us busy for the next decade or so.

 

[Jo Best]

Saw this posted on facebook: http://www.megaresearch.me.uk/2017/...pplication-and-patient-advisory-group-update/

An update from the Scientific Team and Patient Advisory Group

First the bad news: unfortunately our preliminary application to Wellcome, submitted at the start of the year, was turned down. No feedback was given so we don’t know why it was rejected.

The good news is that, in the last couple of weeks, the Scientific Team and the Patient Advisory Group have prepared a new outline application for further funding. With a short deadline it was tough going at times, but having had substantial input, the Patient Advisory Group are very pleased with the submission.

A very productive meeting between Prof Esther Crawley, Prof Julia Newton and the Patient Advisory Group was held early last week with some important points agreed:

• Both the Scientific Team and the Patient Advisory Group agree that it is absolutely essential that we collect data from those most severely affected by M.E., and those affected long term. This will require home visits which are very expensive, and the financial limit of the current application will not cover this. However, it was confirmed at the meeting that we will submit an application to this current funding call with a full commitment that further applications will be made to include home visits. By establishing the MEGA bioresource and proving to funders that we can collect data from patients in clinic, the chances of us successfully accessing further funding are hugely increased.

• Post-exertional malaise will be a prerequisite for inclusion in the bioresource. If successfully funded, a detailed definition of post-exertional malaise will be determined primarily by the Patient Advisory Group in conjunction with the ME/CFS specialists on the Scientific Team.

• Those whose samples are collected for the bioresource will have their diagnoses and severity of illness confirmed and recorded at point of collection. Several case definitions will be used to categorise patients and it will be clear which case definition any given patient fits into. When analysing results of tests undertaken on samples from the bioresource, the Scientific Team will be clear which subset of patients the results specifically relate to (we will address this in more detail in a forthcoming blog post).

We have updated our Q&A page to highlight the points above.

Patient Advisory Group update

Three Patient Advisory Group members recently decided to leave the group. Their much valued contributions will be missed and their reasons for leaving have been taken on board.

Since their departure, valuable progress has been made and we are happy to report that, despite the initial rushed formation of the Patient Advisory Group and the pressure caused by tight application deadlines, things have really picked up and are beginning to fly. Enthusiasm among Patient Advisory Group members is high, the Scientific Team remains focused, and we all wait with fingers crossed for a positive outcome to this preliminary funding application.

As Prof Newton says, “MEGA represents the opportunity to develop the largest ME bioresource in the world. This will give researchers the material to address some of the big questions that are currently unanswered in ME, to not only help UK patients but the global patient community.”

Filed Under: Blog
http://www.megaresearch.me.uk/2017/...pplication-and-patient-advisory-group-update/

 

[Jo Best]

Money, money, money....not in my name. https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Molly98]

More spin than Alistair Campbell, they haven't employed him as their PR and media consultant have they?

 

[Yogi]

thread here.

http://forums.phoenixrising.me/inde...ite-update-march-29th-2017.50335/#post-829934

I do not know why it is in the discussion and not general news page???

 

[batteredoldbook]

But even there, different people have different ideas about what respect mean. I can see how some people would see your advocacy as being disrespectful to advocates who have decided to prioritise different areas to yourself.

I think it would be overly even-handed to think Prof. Coyne merely had a "different" idea of respect when he called me an "assh*le*. This was the line and I think he crossed it both with me and with other people with M.E. Further, if there is no way to report such an event without further disrespect, I'd say that was a pretty clear sign of a community with a problem.

 

[Jo Best]

James Coyne behaved badly towards Jeannette Burmeister and others. Charles Shepherd behaved badly towards the trustees of Invest in ME Research in the context of this thread. So we are not a community of clones or even on the same page regarding our methods or moral compass. That shouldn't deflect from the Opposing MEGA petition imo. https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[batteredoldbook]

So we are not a community of clones or even on the same page regarding our methods or moral compass. That shouldn't deflect from the Opposing MEGA petition imo. https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

I don't think MEGA can ever work because of the disagreement within the "big tent" over what makes good science. Prof. Ponting told me he thought pace bad science, Esther Crawley considers it "well conducted". Well, when you disagree on fundamental methodology I think it's Game Over before you start.

Such contradictions go on and on because people won't address them. Everything these days has to be held in a spin state useful only to those who see advantage to playing both sides of an argument. I don't think that's helpful in MEGA research and I don't think it's healthy for those advocates who have been so obviously abused.

 

[Jo Best]

@batteredoldbook When they created the CMRC "big tent" they couldn't even agree what to call the disease they're supposed to be studying so it's not surprising they disagree over what makes good science. Three UK ME charities saw this at the start: Invest in ME Research, The Young ME Sufferers Trust and The 25% M.E. Group. The job I had to give up when I got too sick with ME to continue working involved a lot of troubleshooting and conflict resolution, but I have seen in the few short years that I've become aware of the ME situation that compromise kills and every day I hear online from the mouths of parents and often from the young ones themselves the unnecessary suffering of children and we all know of the deaths of young people with ME or CFS from suicide or organ failure, and friends lost before their time.

 

[A.B.]

You can't collaborate with people whose goals are opposed to your own goals.

BPS oriented researchers will only accept biological factors that don't threaten the BPS model. Patients want to find biological factors that lead to treatments that aren't based on BPS principles. Collaboration cannot possibly work.

Collaboration might stand a chance if the BPS proponents clearly acknowledge that a BPS approach is inappropriate for the vast majority of patients (see PACE). The statements they have given in this regard are vague and only acknowledge that CBT/GET don't work for everyone, which can just mean that, given the chance, they would introduce some other BPS based treatment.

 

[batteredoldbook]

Agreed. The CMRC want time, money and patient trust while demonstrably ignoring patient concerns and refusing to judge Pace, the largest bit of CFS research to date. It's a joke.

People with M.E deserve better research, better collaboration, and better personal treatment than the CMRC is able or cares to give. I urge @charles shepherd to reconsider his involvement with a group that increasingly appears at odds with progress in M.E.

 

[Valentijn]

Personally, I'm not concerned by one advocate trying to push other advocates to get involved in some issue they don't want to.

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.

 

[batteredoldbook]

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.

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?