http://crass-pollination-forum.2287843.n4.nabble.com/Myalgic-Encephalomyelitis-td4607325i40.html
Nurses called Sparky, Tothepointe and others make the following comments:
- "CFS/ME - continual fuckery syndrome/massive ego"
- [in reference to ME patients] "How amazing! Look at all the energy these delicate flowers have found! They can stare at that big bright screen and type on those little keyboard letters and try to put things in coherent order!"
- [in reference to a video of Linda Crowhurst] "... she flings her head into the chair like a demented woodpecker"
- "She gets sedated to have the central line put in? How do they sedate her without IV access? We just throw a sterile drape over their face and tell them to chill out under there, if they start to fuss."
- ".... "ME" ... seems a weird blend of passive agressive martyrdom. Here in the US if you don't complain about it, it doesn't exist."
- "ME could be a kind of folie à deux. Often it's a mother daughter thing starting of with the daughter suffering from some postviral fatigue. This normally wears off after a couple of days. But in these cases they get so much attention and loving care that produce more dramatic stuff to keep that situation going. Mom then founds a support group for ME /CFS and finally has some sense of purpose and significance in her life. So to them it's a win/win situation - at least it feels that way.
- "I have a friend who was perfectly normal (a bit of a drama lama but nothing unbearable) until she got 'ill' and forced her GP to diagnose her with ME. She now frequents online support forums and has turned into a total drama queen bore. Within the space of a couple of months, she decided she could no longer walk because of the pain in her legs and needed a wheelchair. She decided she could no longer type and needed one of those speech to text programmes. She decided she was too ill to use the bath or shower, so she wiped herself down with wipes every day. She decided it hurts too much to chew, so she bought herself a load of nutrition shakes. She loves to tell me about her neurological disease and how angry she is that her GP won't refer her to a neurologist. Her favourite one has gone on long-term leave and wouldn't you with a patient like that?"
- [about Karina Hansen in Denmark, who's very ill with ME and has been threatened to be put into a psychiatric ward] "Her family have lived in a trailer in the yard (yes, that's right, A TRAILER IN THE YARD) for two years because she can't handle the noise. She hasn't had a bath in two years, it hurts too much. Apparently moving her will cause her to die, I'm not sure why. I suppose she'll just snap in two. Maybe her bodily funk has melded her to the bed. Here is a picture of Miss Karina. Shhh, let's be vewy quiet. If we are noisy SHE COULD DIE.
- [about Linda Crowhurst and her uncontrollable body movements] "I was reading this [thread] while half watching the enthusiastic head bobbing (almost like there's a woodpecker in the back of her head trying to peck through the chair) and the combo was exceedingly delightful."
A lot of PME have posted responses; some are not helpful to us as a patient group! If you want to post a response, please be mindful and don't sink to taking cheap shots. We don't need any more enemies. Nursing is a tough job, and they feel the need to blow off steam in a safe place. While I understand that, I do not think it should be at the expense of other's suffering, and this is where they go wrong, further habituating patterns of hate, intolerance and bullying amongst themselves. For the record, I think some of them are otherwise pretty good at their job, and no one is wholly good or wholly bad. Some could use an attitude adjustment, but it needs to come in their own time. Remember: 'Hatred never ceases by hatred, but by love alone is healed' - The Buddha.