I’ll be writing my blog posts for people with M.E. and for my colleagues in the Pharmacy profession based on the facts and I will assume (take for granted) that everyone automatically knows M.E. is a neurological illness.
I know about all the politics from personal experience, believe me, I know too well. I shouldn’t feel the need to explain why or how I know, I will at some point when it’s less painful, but I will just tell you that I’ve had 27 years of mistreatment and stigma. I know all of our experiences will be different and I don’t purport to represent all of us but there are common themes in what we have all endured. I don’t need telling at every available opportunity, as this assumes I don’t know what it’s like for us, when I’m all too aware.
We should start again, from a positive position, where we assume a biological aetiology and not even entertain the idea that ME is psychosocial or a made up illness. I sense that every time we jump on someone on Twitter to tell them about how we’re disbelieved, that this has the potential to make people question whether M.E. is real even though they weren’t already thinking that. We can’t keep on with this, trolling people who are trying to do positive things. It perpetuates the misinformation about us being crazy hypochondriacs. Behaving badly and disrespectfully certainly doesn’t do the cause any favours whatsoever, especially when it’s towards other M.E. sufferers and those without the illness who are genuinely trying to help us. That doesn’t help people, it further alienates us and is what gives M.E. patients a bad name.
I wrote last week of some positive awareness news from Norway. We should celebrate that we’re going through a pivotal point in M.E. history. The tide is turning due to everyone’s campaigning and bio research paper after bio research paper being released. Stigma and disbelief of our illness is starting to be eroded away. We need to keep our cool and forge on, putting politics aside for those we need to have that fight with.
I’m deeply concerned that if we’re not careful we will blow it. We will blow the progress that’s being made from the awareness which we have all had our part in raising over decades, by being angry with those that are trying to help, rather than uniting and getting behind them. I’m angry too but let’s channel it constructively.
I believe we will only achieve what we are entitled to by coming together as patients, charities and health professionals, collaborating to reach our aims. If you don’t like something, join up and change it. Of course we should challenge stigma and misinformation wherever we find it but where we don’t, we need to concentrate on moving forward towards our goal of supporting and empowering people living with M.E., along with finding out more about the illness and ultimately a diagnostic test and a cure.
Since writing this article, I’ve added these three opportunities to engage with NHS and government policymakers about what we need for M.E. These are avenues we can use to campaign positively and constructively:
- Help Shape Research in the NHS – suggest research funding for M.E. research in the NHS (ongoing)
- NHS Citizen Gather – addressing our needs in the NHS (ongoing)
- Accelerated Access Review – speed up access to new tests and treatments (now expired)
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