This blog is inspired by a comment I received on a PACE-related Foggy post a while ago by one of my medical professional friends. She has followed Foggy for a while and is very supportive of my efforts, she was simply playing devil’s advocate.
She asked how M.E patient advocates are any different from MMR vaccine deniers; loaded up with conspiracy theories about how the ‘establishment’ is harming people with medical initiatives and policies. She was comparing our PACE fight with the current ongoing social media and school gate fight against the MMR vaccine in the UK and US. I like being asked questions about things that I’ve posted and appreciated her being a devil’s advocate.
I explained that we have around 100 doctors and scientists in our corner reinforcing what patient advocacy groups and individual advocates are campaigning against. We have scientific proof in our favour. MMR vaccine deniers don’t have that and they must also acknowledge that measles is making a comeback since many parents opted to not give their child the MMR vaccine. My own personal view is that the negative impact of having the jab in a minority (Vaccine deniers claim that MMR jabs cause Autism) is massively outweighed by the benefits to large swathes of people. The World Health Organisations states this about Measles on their website (who.int):
- Even though a safe and cost-effective vaccine is available, in 2017, there were 110 000 measles deaths globally, mostly among children under the age of five.
- Measles vaccination resulted in a 80% drop in measles deaths between 2000 and 2017 worldwide.
- In 2017, about 85% of the world’s children received one dose of measles vaccine by their first birthday through routine health services – up from 72% in 2000.
- During 2000-2017, measles vaccination prevented an estimated 21.1 million deaths making measles vaccine one of the best buys in public health.
As I explained to my friend, there is now considerable scientific evidence to prove that, in the majority of cases, Graded Exercise Therapy (GET) harms patients. Yes, a minority of M.E patients find their M.E improves after following a GET programme but that is certainly not the norm.
I hadn’t contemplated it before, but what if the current MMR vaccine hysteria is harming our cause? Tarring us with the same ‘fake news’ brush? NHS England have had to take steps to deal with ‘fake claims’ on social media about the MMR vaccine. They have also had to make a number of announcements in the UK press to persuade parents of the benefits of the vaccine. Because of this, the credibility of the vaccine deniers has been damaged but their impact continues. Measles cases are still on the rise and MMR vaccines have an 87% take up rate in the UK.
I have been invited for a ‘top up’ jab by my GP practice because of the upsurge of Measles cases in the UK. I will be taking them up on the offer once they have stock available. This would not be necessary if parents were immunising their children.
I wonder if the Measles issue is making doctors and nurses roll their eyes when they hear members of the public fighting against other health policies such as PACE? Is that why we aren’t being taken seriously? Any number of PACE conspiracy theories can be found online, not all are accurate.
As the song says –
Rock the boat, don’t tip the boat over.
After PACE has, hopefully, been and gone, we will have to continue working closely with NHS England and NICE. I agree we should fight with every breath in our bodies, but we should moderate our language to ensure we are taken seriously. Otherwise, people, including medical professionals, are going to tune out and pay even less attention. It will be seen as yet more ‘fake news’.
Love Sally
and Foggy (OBVIOUSLY) xxxx
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