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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Can you give an example or two please, and why they are poor.
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.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
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
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!
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.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.
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 MEGAJust 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
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.
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.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.
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.
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.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?