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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. B

    Petition: Opposing MEGA

    I'm afraid I have limited power also. Please feel free to link to my post here on OMEGA if you think that will help.
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    Petition: Opposing MEGA

    Was referring to Invest in M.E's facebook last year where Prof Coyne called an M.E patient advocate "sick and crazy", told another person to f*ck themselves and then later told me that I was an assh*le when I asked him whether such an incident would happen again. [ ] I think people with M.E...
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    Petition: Opposing MEGA

    Am sorry to see Prof Coyne's words used to support opposition to MEGA. The man called me assh*le as I stood up to him for the way he treated people with M.E.
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    Petition: Opposing MEGA

    This is really great news. Thanks for sharing it, I'd not have known.
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    Petition: Opposing MEGA

    M.E patients can stop MEGA any time they like. They simply have to move into opposition to the charities involved. Eg: I moved into opposition to the MEA after Dr Shepherd chose not to address my question (above). However, it will be very hard to challenge current medical misbehaviour while...
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    Petition: Opposing MEGA

    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.
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    Petition: Opposing MEGA

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

    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...
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    Petition: Opposing MEGA

    I tried to cover this in fluid/fixed discussion above. 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...
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    Petition: Opposing MEGA

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

    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...
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    Petition: Opposing MEGA

    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?
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    Petition: Opposing MEGA

    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...
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    Petition: Opposing MEGA

    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...
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    Petition: Opposing MEGA

    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...
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    Petition: Opposing MEGA

    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...
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    Petition: Opposing MEGA

    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...
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    Petition: Opposing MEGA

    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...
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    Petition: Opposing MEGA

    Again, @charles shepherd pls see my question above.
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    Petition: Opposing MEGA

    MEGA started with the views of two hundred advocates being disregarded. Without a foundation of respect; things were never going to go well. Within M.E, patients' precious time is continually wasted. I move into full opposition to the ME Association.
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    Petition: Opposing MEGA

    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.
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    Petition: Opposing MEGA

    Thank you so much for the invitation. Unfortunately, it is also well past time for me to stop talking about M.E as a whole. To be honest I only stayed on because I believe MEGA to be such an unmitigated disaster for pwme. From my twitter and facebook feeds yesterday: "Last year I said I was...
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    Petition: Opposing MEGA

    A New Year's resolution is not spend any more of my precious time and energy discussing the ridiculous, and I think disgracefully self-serving, MEGA study. I thoroughly enjoyed talking to you all here on PR though. I am very glad I did that. It was cool. Super best wishes to all...
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    Petition: Opposing MEGA

    "Fraud" doesn't, I think, capture the essence of Pace: I feel Pace runs in almost perfect contradiction to science; It is elegant but it is anti-science. The MEGA team appear, to me, to be trying to found their research endeavor, not on the shoulders of giants, but over a great big hole.
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    Petition: Opposing MEGA

    Thank you for posting this here Jo. I strongly agree with @Jonathan Edwards on the CMRC: "I actually think the ME community would be better off without it if it is going to behave in this sort of incompetent and destructive fashion." I would still dearly love to see all parties working...
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    Petition: Opposing MEGA

    "Our advice to MEGA is – disband" Agree 100%. MEGA is an invitation to people with M.E to repeat the mistakes of the past. If they won't disband, we should reject.
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    Petition: Opposing MEGA

    Absolutely. There is a clear and genuine concern from patients here which is being glossed over. M.E patients weren't born yesterday - in fact some of us have been ill for decades. I think the UK M.E charities involved in MEGA come out looking very badly from this.
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    Petition: Opposing MEGA

    Hi @Countrygirl, thanks for flagging this message up. I for one would have missed it otherwise. As I think I mentioned above, this is what I wrote to Dr Phil on Twitter after his article: "Until you address PACE you've a contradiction: You call it a sleight that M.E due to faulty beliefs but...
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    Petition: Opposing MEGA

    You are absolutely right to remind me that broad science is out there, but I guess I want the UK situation fixed. Our opinions are, I think, different on this but I see an open wound between doctors and patients in M.E and another between the research groups.
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    Petition: Opposing MEGA

    I agree a majority of people are opposing MEGA. It is because so many people's views are so clearly being ignored that I feel so depressed today. I know there are other projects out there. But this is not what I would want. As I've said above, I would want everyone in the same room doing...