@Sunshine3 Ive spent a little time in mitochondrial disease forums and I quickly realised that the symptoms people describe and the crashes are...
I second that @Art Vandelay Simone and Penelope seem great and Dr Deed, although he seems to have taken on other interests recently shared a...
I see your point @Sid. Such a pity as I have actually never heard someone speak about ME in a way that so closely matches my own experience. Yet...
He seems like the sot of guy who would like to be part of activism against ME discrimination...And he seems a great example of severe case. I just...
The long version of this clip where Howard Bloom recalls having severe ME has been viewed 500000 times in 1 day... [MEDIA]
Which therefore also means the media..
Hi @Alvin Not my singular goal just my thoughts (perhaps ignorant to the challenge) of one piece of a complex effort to get more funding. Not fear...
@Snow Leopard whrn starting the thread I had in mind the goal of improved marketing was to get more government funding. @Trish I also...
Thankyou everyone for for participating in the thread... Having read them all I agree that ‘the living dead’ is not a good idea on balance for...
@ukxmrv thanks for your response I read the article and I wasn't aware of the AFME campaign. I realise that a major hurdle for advocacy...
I like living death disease. I also agree that #millions missing is quite good. I think the #time for unrest is great for galvanising the...
Cheers for your replies @Trish and @arewenearlythereyet . Trish I am not sure how to change the heading? Happy to if you can let me know how. I...
Not at all I appreciate your thoughts. I just think clearly the marketing of the disease has been a massive fail. The proof is in the pudding so...
All good points Alvin...I agree.
Ultimately, we need real media attention and the media are driven by headlines... It is most important thing that gets them readers/viewers. They...
I used that headline to point out the power of marketing...How to get attention My name is Anthony Ross. I am a former Wimbledon player,...
Yes i get both internal tremors in my core and chest that I’ve seen other people describe as like their phone vibrating inside of them and also...
Thank you @gingergirl. I spoke to another patient with similar symptoms to me and she said the New York- Presbyterian hospital where she is a...
So I have received my individual tests from my hospital stay in 2016 and the confusion and frustration just gets deeper. I see the topic of...
@Ryan31337 i had no ragged red fibres or Cox findings on biopsy which are the 2 basic indicators of MM on biopsy but both doctors I talked to...
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