Petition: Opposing MEGA

[Barry53]

Very poorly worded petition.

Can you give an example or two please, and why they are poor.

 

[Sidereal]

Can you give an example or two please, and why they are poor.

I already gave examples on the previous page of emotive language that I don't think will be taken seriously by anyone in a position of power.

For the record, I oppose MEGA and think an open letter or a counter petition are a good idea, but I wish we had been able to produce something better here on PR instead of this mess.

 

[Countrygirl]

After much thought and consideration...............and sadness.........I have decided to sign the petition and have added a long comment. To support MEGA is to dance with the devil. We have suffered enough already.

I have finally concluded that the problems associated with this trial are beyond redemption.
The people who have asked us to approve their research clearly either have no respect for the patient community or just do not understand or even care about our history. We cannot accept their behaviour towards us. No more!

 

[barbc56]

I don't understand how this competes. MEGA haven't even applied for a grant yet, and only plan to apply to Wellcome initially - who to date have NEVER funded mecfs research, so I don't see how it competes for funds

I also find this confusing. It seems we don't have enough information to predict one way or another how this will turn out and these advocacy strategies may not put the me/cfs community in the best light if the timing is off.

As much as I don't like the BPS researchers, there are so many other reputable scientists on the committee, who just might override any BPS influence. I think this is just as possible as the opposing view. But, we don't really know either way.

Crawley certainly has lost a lot of credibility and that may be in our favor. Maybe her skills as a geneticist are what are wanted. If she is kicked off will that give the adherents of the BPS a good excuse to dismiss any research which may show that me/cfs is not a psychogical condition and end up in the long run blaming the patients. That could take us back to square one.

Why take the chance of turning off the legitimate researchers.This is too good an opportunity to get these scientists to be willing to do research on me/cfs.

There may come a time when it will be important to initiate some of these ideas and that is the time to act. I'm not saying to stand down and do nothing but to keep a watchful eye on things and keep a critical perspective on what's going on.

I hate to be so blunt but are we once again going to become our own worst enemy by letting our anger be the primary driving force of our advocacy? Anger does fit into the equation and justifiably so but sometimes putting anger first keeps us from seeing the big picture and putting things in perspective. Maybe I am misreading this.

Like so many things in life you have to weigh the benefits against the harms. But that doesn't mean we will all come up with the same conclusions.

xcellent, and world-class UK biomedical researchers are planning a huge biomedical study via MEGA. We should encourge both, not try to close down research

Agreed. Let's not shoot ourselves in the foot.

 

[Keela Too]

After much thought and consideration...............and sadness.........I have decided to sign the petition and have added a long comment. To support MEGA is to dance with the devil. We have suffered enough already.

I have finally concluded that the problems associated with this trial are beyond redemption.
The people who have asked us to approve their research clearly either have no respect for the patient community or just do not understand or even care about our history. We cannot accept their behaviour towards us. No more!

Yes. I too felt sad that I had to oppose research into ME.

However once bitten twice shy, so I have very little trust that this study will be reported cleanly when certain discredited names are involved.

IMO Patients now need to be treated with respect, and the inclusion of researchers who manipulated data, with-held data, and/or hold a biopsychosocial aetiology for ME, are not researchers to command any respect.

New researchers entering the field of ME will already be aware that there is controversy - no doubt of that I'm sure. So they would do well to find out what the upset is about. Perhaps they will then understand the patients' concerns. If they don't care to try and understand, then that is rather sad in my opinion. After all I'd like to think researchers are researching to find answers, not just to gain grants.

So I signed OMEGA. Sadly but confidently.

 

[Sleepyblondie]

I don't think using terms like 'discredited', 'sham' and 'Wessley School' is helpful in trying to get one's point across.

But it's true

 

[AndyPR]

I hate to be so blunt but are we once again going to become our own worst enemy by letting our anger be the primary driving force of our advocacy? Anger does fit into the equation and justifiably so but sometimes putting anger first keeps us from seeing the big picture and putting things in perspective. Maybe I am misreading this.

Genuinely curious as I'm, relatively, not long in the ME online community but what exactly has ever been effected negatively by, for want of a better phrase, an angry advocacy position, particularly in the UK? My general understanding is that essentially any voice we have had has landed on deaf ears and unable to influence anything before now, so it would appear to be a totally natural reaction to me when people behind some of our suffering are part of the study.

Arguments have been made elsewhere about how White and Crawley won't be able to have much influence but if that is the case then they can be safely ditched, and MEGA would then earn a lot of trust from the patient community, but if we were to approach MEGA 'cap in hand' and meekly ask them "please, if you don't mind, would you possibly consider maybe excluding this or that person" they aren't going to do that are they?

To me, it comes down to MEGA trying to sell us this study, and for a lot of us they need to come up with a far better offer before we buy what they are selling.

 

[worldbackwards]

I'm not signing this, because I've decided that the CMRC are irrelevant and it makes me feel better to do so and not to think about them. I also, from the language used, feel that I wouldn't enjoy spending five minutes in the room with the self indulgent people who put the petition up, and I don't like supporting things by people I have no time for.

But I will say one thing: the director Michael Powell once said something along the lines of, if you go into filmmaking on your knees, you go out on your arse. I would say much the same for science: if you subordinate it to a political process, what you will end up with is a mess that does little good for anyone.

People are involved in this project, not because of their expertise, but because it would create too much fuss if they weren't, as far as I can see. These people are not well known for producing clear and useful scientific outcomes, but rather for blurring lines, obfuscating issues that should be simple and ignoring patients in the process. Anything in which they are involved will likely turn into a tedious and uninterpretable mess and those who support it are, at best, taking a hefty gamble which hopes against hope.

 

[docsimsim]

Just shared the link to the petition on the ME Associations Facebook page with the following message

At the moment, I'm not holding my breath

Good luck with that. Not too optimistic re the chances of it being posted on the MEA page. They're asking their members to support MEGA

 

[Jonathan Edwards]

I hate to be so blunt but are we once again going to become our own worst enemy by letting our anger be the primary driving force of our advocacy? Anger does fit into the equation and justifiably so but sometimes putting anger first keeps us from seeing the big picture and putting things in perspective. Maybe I am misreading this.

You made reasonable points Barb but my view on this has nothing to do with anger. It has to do with specific concerns, some of which are best not aired because other people are affected.

 

[AndyH]

No psychiatrist is officially involved in MEGA, so I'm unsure how much of the BPS school ideas actually will be represented in it. White retired from research, and whilst they say he still has an advisory role, to me it's a kinder way of saying he is more or less out. Crawley is not a psychiatrist, so she might even have some ideas related to the biomedical research, which after all is what this MEGA study is about, we shouldn't immediately assume the worst.

If we look at UK CFS/ME research, even with its imperfections MEGA is a step in the right direction, considering that up to this day all major UK research was basically around the BPS model and GET/CBT.

Psychococial bias isn;t the same as psychiatrists being involved. Firstly, psychiatrists are involved but either way, if you refer to people who have biomedical qualifications, many people do but practice in a different area and this is part of the issue. Whilst people like Crawley qualified in epidemiology, her practices are very much psychosocial. Her life is spent on psychosocial views, psychosocial research, publishing in psychosomatic journals and so on. Then of course you have the psychsocial biased charities such as AYME and A4ME. As I said, too much psychosocial bias in what has been promoted as a bioloigical study. The issues with the study start with diagnosis for referral to the study and will undoubtedly end up with not enough funding to have done anything useful. Just because there are some real scientists involved, doesn;t make this good. People have to see the much bigger picture.

 

[Jo Best]

I don't infer anger from the tone of the petition, it just speaks to me that "enough is enough".

However, I see nothing amiss in people feeling angry when they've been ill for many years with an untreated neurological disease or watched their children suffer (which may be worse) when they see the very same people who've deceived them, to an extent that is only just coming fully into light, now gushing forth with promises for their next project.

Action for ME told patients (quite excitedly if I recall correctly) that the PACE trial would compare pacing with other treatments then proceeded to devise a treatment specifically for the trial which they called Adaptive Pacing Therapy and which wasn't pacing at all. Hey presto, no prizes for guessing which 'treatment' fared worst in the trial, according to the researchers anyhow, and with no differences at long term follow-up. Have they said sorry? No.

So, do I feel somewhat annoyed when I read a promotional petition for a prospective study, read the hopes of patients/carers waiting for years to hear of just what this study promises, then find, by the petitioners updates, that they haven't yet thought it through, may not have enough money, one member of the group (PDW) that people raise concerns over resigns within a couple of days of the petition being posted, but will be advising instead etc. etc.?

Well, the fact is I'm too ill with ME to allow myself any strength of emotion, but I can write, "no more".

 

[AndyPR]

505 signatures so far.

 

[A.B.]

@Simon, could you explain PACE and the re-analysis to Ponting?

 

[Esther12]

I don't think I could support MEGA while Crawley was involved.

The phrasing of petitions is often less than ideal... I have a lot of respect for the OMEGA acronym though! Tempted to sign just for that.

I tend to find myself agreeing more with the people in favour of OMEGA than MEGA, and it seems unlikely that there's going to be a second petition now so we face a binary choice on it. I wish I knew how to do this perfectly, and turn MEGA into a good project, free from Crawley et al, that could be whole-heatedly supported.

The politics of all this is pretty interesting, isn't it? It would be easier if we didn't have patient organisations like AYME and AfME making things worse.

 

[Jan]

I'm not signing this, because I've decided that the CMRC are irrelevant and it makes me feel better to do so and not to think about them. I also, from the language used, feel that I wouldn't enjoy spending five minutes in the room with the self indulgent people who put the petition up, and I don't like supporting things by people I have no time for.

But I will say one thing: the director Michael Powell once said something along the lines of, if you go into filmmaking on your knees, you go out on your arse. I would say much the same for science: if you subordinate it to a political process, what you will end up with is a mess that does little good for anyone.

People are involved in this project, not because of their expertise, but because it would create too much fuss if they weren't, as far as I can see. These people are not well known for producing clear and useful scientific outcomes, but rather for blurring lines, obfuscating issues that should be simple and ignoring patients in the process. Anything in which they are involved will likely turn into a tedious and uninterpretable mess and those who support it are, at best, taking a hefty gamble which hopes against hope.

The CMRC are no longer fit for purpose, how do we get rid of them? Nobody has any trust in them to deliver anything worthwhile for patients.

You said you are not signing this, you do realise this is the anti-MEGA petition we are talking about, not the MEGA one?

 

[Sidereal]

The CMRC are no longer fit for purpose, how do we get rid of them? Nobody has any trust in them to deliver anything worthwhile for patients.

Good point. There is going to be other awful research coming out of the CMRC, not just MEGA. For instance, the really worrisome neuroimaging Edwards/Harrison study proposed last year to investigate CFS as a psychogenic movement disorder. It would be in ME patients' best interests if this organisation didn't exist, at least in its current 'broad church' iteration.

 

[Jan]

Actually, I take that back, I don't think the CMRC have ever been fit for purpose have they, only for providing lots of work for the BSP people?

 

[Jan]

505 signatures so far.

530 now, 25 more in about 15 mins.

 

[worldbackwards]

The CMRC are no longer fit for purpose, how do we get rid of them? Nobody has any trust in them to deliver anything worthwhile for patients.

You said you are not signing this, you do realise this is the anti-MEGA petition we are talking about, not the MEGA one?

Yes, I realise that. I think its language is a self indulgence. It's like throwing a tantrum and then expecting everyone to turn around and congratulate you.