I have no idea why in 2018 ME CFS patients and patient advocates, heroically still engage with the poison that is 'Social Media'. I'd stay well clear of such a thing due to its danger in this very volatile political situation where ME CFS sufferers are treated like sub humans. In other words, any appeal to authority who control the destiny of ME CFS sufferers is a waste of time. This was obvious back in 1988.
No other disabled group tolerates having to justify themselves by politely suggesting online someone engaging in disability shaming and possible hate crimes (media articles slamming ME CFS patients as inferior abnormal people) should not be so mean - pretty please with a cherry ontop.
It's actually really psychologically harmful to beg bullies not to harm you for decades knowing they never will stop. Total failure in obtaining your human rights is all that's achieved. Patients and advocates thus look weak. Never give a bully this power though, as it emboldens them further! They love it, it turns them on, arouses their sense of domination making you cower into submission.
On Social Media, when faced with reason and logic by a powerless minority, all powerful serial abusers do is claim further victimhood from those resisting abuse, in the hope someone will make an emotional outburst in text to them, thus giving them more ammunition for victimhood and ability to report them. This then allows for another media article full of lies and exaggeration. The process of action, reaction, action is thus perpetuated.
I'd ignore ignorant people in life entirely, and perhaps instead try somehow to prepare a written fact based dossier well away from prying eyes on how UK GMC registered NHS doctors (and colluding allied) staff have systematically used and abused you over the years including if they have caused secondary mental health issues such as suicidal ideation, depression, anxiety, panic disorders, agoraphobia etc. As a bonus, you can use their social media posts that shame the ME CFS community against them, posts that breach GMC code of conduct but do it quietly. Don't advertise.
Then when it's completed over years of your hard work detailing your horrendous NHS treatment (mental, physical, sexual abuse in hospital admissions for example), you seek legal advice if you can sue for damages now you are finally believed, maybe in another decade once the American and European biomedical research makes unifying discoveries into a robust disease model no one can deny.
Conversely, by going tit for tat against Social Media sadistic cry babies (who intentionally antagonize vulnerable disabled people society doesn't care about) all you do is feed the trolls ego, trolls who are invincible whilst honest large scale Science lays dormant.
If diagnosed with ME CFS, resisting disability hate online that is politically sanctioned is like screaming into a hurricane. First, remove yourself from the storm zone before taking a deep breath, exhale out gently and regroup mentally.
Write down everything that has happened to you in your life, and only at the correct point in history, do you release it to show people what REALLY happened under the communist regime of ME CFS 'evidence based' medicine comprising of fraud based CBT GET and fraud based F48.0 Chronic Fatigue research that was knowingly used by NICE to misrepresent those with organic G93.3 ME CFS states.
Remember, UK ME CFS patients cannot donate blood, umbilical cord stem cells or bone marrow for a reason. They know damn well you don't need CBT GET and the use of inappropriate therapeutic intervention dreamed up by the disability shamers was simply to waste time, as with time, the original cohort of post infectious patients die out so can't claim compensation for a ruined life that PACE says is your fault.
A nice little trick, except this terrible lie now affects, potentially, tens of millions so we're dealing with mass murder. Thousands to tens of thousands will have died globally from ME (mostly from suicide) since ME PVFS was declared a harmless chronic fatigue syndrome in 1988 using fraud based Science - biospychosocial theory CFS that recommends CBT GET treating a presumed universal deconditioning arising from presumed fear avoidance causing and maintaining the symptoms of ME that aren't even symptoms of NICE based F48.0 Chronic Fatigue that NICE use as a research base for ME.
So yes, NICE have majorly commited a human rights violation in patients who have evidence of organic disease. Remove the evidence (via draconian NHS implementation in the UK of BPS CFS theory) and they presumed independent Scientists outside the UK wouldn't catch up before patients with organic ME die out. They were wrong.
Knowing this, when possible, remove yourself from Social Media medico political drama and avoid acute stress as much as possible. Even a few hours of upset will worsen an inflammatory response, never mind trying as a patient to correct those who are unevolved yet involved in keeping you sick.
Trish@ozfish
Clare Gerada #FBPE@ClareGerada
Barbieloo@BarbR666
Anton Mayer@MECFSNews
Snowy@SnowyPanthera
Jo Hurlow from Birmingham@open_debate
It'sME(Jaime)@exceedhergrasp1
Dr. Homeslice@8Homeslice8
Jacquie Wilson @MEwarrior_au
John Thompson@TompsJ