Hello,
I mentioned this subject in today’s FogPod podcast, the past week has been particularly concerning and upsetting for not only myself but many others within the M.E./C.F.S. community.
I had consciously taken the decision to not engage with Twitter threads about the articles in various newspapers over the past week, other than to RT or like particular comments. Purely because I didn’t feel like I could add anything new to our argument. Rest assured, I have felt angered and upset by those articles just as much as every other M.E./C.F.S. patient.
My M.E./C.F.S. weary brain cannot understand what we, as a patient community, have done to deserve such treatment from journalists.
As I said in FogPod, the M.E./C.F.S. community is a microcosm of the global population where Twitter is concerned. There will always be a very small minority who overstep the mark with their comments and I’m sure the researchers mentioned in the articles have indeed received a small number of abusive remarks. However, compare that with the desperation and upset caused by the scientists’ actions and ‘flawed research’ on millions of M.E./C.F.S. patients worldwide and it pales into insignificance.
This past week has demonstrated that the difference between the two upset and abused entities is that one has a voice and the other one doesn’t. Scientists and researchers have the Science Media Centre, BBC Radio Four, and national newspapers and we have….. charities and advocates with limited funds and resources at their disposal(Thank you to Dr. Frances Ryan for her excellent Guardian article and for encouraging other journalists to follow suit x).
Today, I have seen a number of comments on Twitter about the lack of visible response from various M.E. charities. I can completely understand where these sentiments have come from but can we blame charities for not wanting to further inflame a toxic situation? The advice from ME Action (I think it was them….) has been to not engage with the hostility and I think most charities agree that is, for the time being, the best way to approach an adversary that has a lot more resources than they do. I think these charities also fully understand that emotional stress is a trigger for patients and so want to calm things down a bit.
My own opinion is that we should stop giving the subject oxygen. By sharing and commenting we are giving them an even bigger platform. So this blog is my only written comment. Otherwise, we are contributing to the ridiculous notion of being ‘internet trolls’ and hostile activists.
One additional point. I saw this on Twitter this afternoon. I am 100% gobsmacked.
https://twitter.com/Stewart61187426/status/1107423843591905
I don’t swear on Foggy but *&&%%$$@##||$|$!! Yes, Tom Feilden wrote one of the aforementioned articles, using SMC information. The last paragraph caused my jaw to drop.
Please do take care of yourselves, step away from the hostility, and don’t feed their fire.
On a happier note, Foggy’s 2019/2020 World Tour is starting on May 8th!! I’ll be giving an M.E./C.F.S. awareness talk in a University of Portsmouth lecture theatre. It’s also Foggy’s launch event! More details to come.
For those of you who missed my short video yesterday, after an online poll, Cure M.E. are Foggy’s fundraising beneficiary for this campaign. Great!
Love,
Sally
(and Foggy OBVIOUSLY)
xxx