Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, commented on a Discussion – Petition: Opposing MEGA
I was very concerned that a counter petition of this sort would be an own goal. However, reading this I cannot really fault it and am actually impressed by much of the wording and argument. The up front reference to researchers whose work has been shown to be substandard may seem inflammatory but we are past that now and I think being to the point is a strength. The point that MEGA is not the only game in town is well made. From my point of view I have yet to see any information that would convince me that any original thought has gone into the project. I am not a fan of Big Data. They jumped the gun and it is entirely legitimate to say so because it is an insult to the patients’ intelligence.
So I think I would encourage all members to sign. If the petition is there and is making a fair point good numbers of signatures would have impact.
Jonathan Edwards, 20th October 2016.
Click here to sign our petition – www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
OMEGA 
Well said, I agree totally
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I have just been diagnosed with EDS3 hypermobility something that should have been diagnosed in the late 60s but Hammersmith Hsptl had decided that joint hypermobility was the prime symptom that doctors should look for. Instead I went through my life with frightening autonomic problems, very bad central pain, bad bleeding during operations and constantly anaemic. My skin is abnormal, my pregnancies were a miracle. Every doctor I saw could see something was “not right” but no one was prepared to say what they thought it was. I was not obviously hypermobile because I had developed muscles (now in agony) through being athletic. Then I had a stroke 20 years ago and I got diagnosed with ME. Now bed bound I went through years of now disbelief from new doctors who had preconceived ideas about “ME” and wanted me to excercise, making things much much worse and actually damage my body.
My body became stiff (as it does with EDS3) and I realised my mother and grandmother had something similar. I also had relatives who had died from the autonomic problems. I spoke to my (new) GP about it and she referred me to the local Genetic department. (Local Rheumatology only recognise hypermobility and Marfan) An EDS specialist travelled to my city to read my medical records and see me, he said it was clear I had EDS3 symptoms all my life. I was due to have three minor operations under GA and all three Consultants called me in to tell me they would not be operating as the risks outweighed the benefits, my BP drops very low suddenly, I haemorrage with slightest cut. The support, adaptions I should have had years ago are now happening.
Why are doctors so misinformed about EDS? Undiagnosed it is very dangerous. Many had an idea what was wrong but it was not their area of expertise, and those who should have known about it found it easier to dismiss it as “ME” or “Fibromyalgia” which opens up the patient to all sorts of abuse and mistreatment.
I am completely bedbound now, can only be upright a few minutes as I faint, my body has given up trying to correct it. Everything is affected now , I have gastroparesis, allergies to huge number of things, it’s just “managing my life now” The quality would have been so much better with an earlier diagnosis and protection from experimental pharmaceuticals which brought on the allergies.
I’m left “in the care” on my GP, no EDS consultant in our Health Board. The local Pain clinic treats everyone the same, a programmes to get patients back to work. My GPs are delighted I finally got a diagnosis, I hope they can have better information for care, they rely on me to tell them what I want but they should have ready made up-date-information.
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Thank you for sharing your story, it touches on several pertinent issues. Also very sorry for all that you’ve been through, and have been put through by lack of awareness of EDS and the same misguided graded exercise regime. You’re so right about doctors being misinformed, they deserve the best quality information to be able to help their patients to the best of their abilities. No-one wants to fail in their profession. Here’s hoping your doctors take the trouble to find out how best to help you now that you have a diagnosis . With best wishes.
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