Thread by @JourneyFog

1/ I've had a few people block me over my Tweet about the division being caused in the ME community over the use of the name ME/CFS. I've even had people pm me on Facebook to rant, then blocked me so I couldn't respond. I'm not sure what wasn't clear about my Tweet #PwME #MECFS

2/ It's not about the name - I hate CFS too. It's about people constantly criticising me, & others, for the name we choose to use. This is what is causing a divide. I only use ME/CFS when writing posts aimed at the general public, this is explained in my original tweet. #PwME

3/ Certain people feel the need to make this personal, it's not. But I guess I'm not going to change their opinions or actions. In an ideal world the name CFS wouldn't exist, but doctors in the UK do not recognise the term ME, just CFS - neither do most of the general public.

4/ I need to use the terminology that is the most appropriate for my target audience - one that they understand and will take notice of. This is causing a divide in the community whether you want to accept it or not. I have had many people contact me privately thanking me for..

5/ ..bringing up the subject. Many people have been criticised and mocked simply for using the name ME/CFS and it's left them feeling like an outsider in a community that should be helping them. It is not acceptable that people are being attacked. #PwME #MECFS

6/ It is not acceptable that people are afraid to speak up. And the people who have been diagnosed with CFS (not ME) are being made to feel like they are not welcome in the ME community, including the newly diagnosed who really need our support. #PwME #MECFS #Health

7/ All I'm asking is: Please stop policing other people's words. No one is telling you what you can and cannot say. Use the terminology you want, just stop attacking us. We have enough to contend with without the infighting. Everyone should feel welcome in this community.

8/ Is this really a good way to work together to bring about change?Haven't we got more important things to worry about? I will continue to concentrate my limited energy on raising awareness of this debilitating illness - this is where I can make a difference. #MECFS #PwME