This blog was inspired by a tweet I saw earlier today. The person who wrote the tweet was asking why more M.E patients weren’t involved in advocacy work and she commented how much more progress could be made if more patients got involved. Before I get started I should make it clear that nothing I say in this blog is a criticism, it’s simply an observation as to what the possible reasons behind the lack of engagement could be.
I’ve said many times over the past 5 years that I wasn’t aware of the M.E global situation until I’d had the condition for 7 years. My GP had downplayed my condition so much I had absolutely no idea that there were millions of people with the same life-stealing condition as me. I joined a patient forum to see what little bits of info I could pick up, but a forum member told me point blank that I did not have C.F.S (that’s what my GP diagnosed me with) and that I had Lyme disease. I was told very bluntly that I was on the wrong forum. I didn’t bother arguing, I left and didn’t attempt to join any other patient support groups/forums.
I had wishy-washy C.B.T. 6 months after I finally got my diagnosis, I accepted that I needed to manage my energy levels if I wanted to continue working and just got on with it. I was able to work (with difficulty) so I kind of got stuck in a very unwell rut for 7 years. I looked on the NHS websites for enlightenment but didn’t learn much. I accepted ‘expert’ opinions from Occ Health and my own GP. It didn’t occur to me that they didn’t know what they were talking about.
I wonder how many patients are just like me. Their condition is so downplayed by doctors they don’t realise that there is a movement to push for progress. It didn’t occur to me to seek help from charities, as far as I was concerned I was on my own.
Then I created ME Foggy Dog in 2014.
Anyone who has followed from those first initial months will know that it was a huge learning curve for me. Initially, as far as I was concerned I had C.F.S not M.E. I was diagnosed by a locum who told me ‘think yourself lucky you have C.F.S, M.E. is so much worse’. I had chosen to fundraise for M.E because if I was feeling dreadful every day, M.E patients must be desperately ill and need help.
I wanted to make sure I was accurately representing M.E patients so did my research. I discovered that I met various different criteria for M.E. Criteria that had never been mentioned to me before and I know my GP had never asked if my symptoms worsened post-activity. They all (I saw MANY different GPs over 2 years) concentrated mainly on fatigue. They hadn’t asked the right questions which is why I wasn’t given an accurate diagnosis of M.E.
I have spoken to many patients who have also been given a C.F.S diagnosis but meet various M.E criteria. The patients I have spoken to are unsure as to their own health situation. Because it is so confusing, they are kind of hiding away and keeping themselves to themselves. They wouldn’t know how to explain it enough to raise awareness. Who can blame them for not doing research or campaigning when many of us can’t think clearly most days. I’ve lost count of the number of emails I’ve received since 2014 thanking me for explaining symptoms or a research paper because it helped them to understand the condition they have had for years.
Then there is the stigma.
Before Foggy, on the rare occasion that I talked about my M.E., I got extremely negative comments from colleagues. Friends were sympathetic but didn’t really understand what my body was going through. So, I stopped talking about my M.E. issues. It was just easier. I didn’t really understand all of the weird and wonderful symptoms and kept my daily struggles private – until M.E Foggy Dog. We know that there is a great deal of stigma surrounding M.E. worldwide. Patients ‘are lazy’, ‘it’s all in our heads’, ‘are hypochondriacs’ and it is hardly surprising that many people don’t want to publicise the fact they have the condition. We know that. So why are we surprised at the lack of engagement with our global movement? To engage means to go public about having a very misunderstood condition.
Do I get frustrated that we don’t raise as much money as we could? Yes. Just think, if every single M.E patient donated £1, $1, or one Euro we would raise at least 15 million for research (based on 17 million estimate). If every patient was on Twitter we would cause one hell of a thunderclap. If patients who are able to leave their houses join in on demos around the world we would create a huge ripple of awareness. But they don’t.
I have lost count of the number of times patients with the same level of severity as me have said ‘I’m so glad you are doing this for us’. My question would be, why aren’t you ‘doing it for us?’. Sometimes it’s just a case of priorities, they may choose to spend time with family (I don’t have kids or a partner), or dedicate every ounce of energy to their job (advocacy and M.E IS my job now) instead of campaigning. It’s their right to choose and shouldn’t be criticised about their decision. For some people, campaigning would be too energy-sapping or far too out of their comfort zone. Everything I do now is for the benefit of the global M.E community, I use every spare ounce of energy to raise awareness and educate; that was was my choice 5 years ago.
One point I would like to make is that people who don’t campaign, but have the ability to do so, can’t then complain about the lack of progress being made. Only a small percentage of the global M.E population are campaigning. It’s going to take time.
Sally and Foggy (OBVIOUSLY)
Please don’t forget to donate – https://www.justgiving.com/fundraising/mefoggydog