In loving Memory of my dear friend Mark who lost his battle with ME/CFS a little over 2 years ago. Mark , You are dearly missed. He would have been 53 today. Yes, in some cruel and twisted irony, his birthday was May 12th (National M.E./CFS awareness day)

| jess
When Jodi (may she R.I. P) stated a difference between ME and CFS, the two terms are merged now=ME/CFS. Most of us who truly fit the ME/CFS illness, loathe the term ‘chronic faigue syndrome’ and the gross mischaracterization of it by many people. It is Sooooo much more than fatigue.

Cort Johnson ,from Health Risings, response to my post:

| jess

My post is below, Corts response is after.

One thing is for sure, we are very fortunate to have Cort Johnson in our corner. His website ‘Health Rising‘ really helps keep the community informed and he breaks down complex studies into more manageable language for us. He is amazing, especially when you consider he, himself, has ME/CFS! Thank you Cort for all you do for us!!!

My post:

Also, Nath does sound more helpful than most, so it is good to have him in our corner. One thing you said about long covid getting all the attention that it deserves irritates me. I’m not saying that people with Long covid don’t deserve research and treatment, etc..but we with ME/CFS (and fibro) have been waiting for decades (for some of us, (I’m curently16 years in) , and I feel we are being treated as less important and less real and less deserving of treatment than the long covid sufferers and this is so incredibly wrong and yet I saw it coming a mile away. Oh well, maybe we will benefit in a backhand kind of way from the research on long covid, but it does not take away the sting. Also, it seems many long covid people , in time , do recover…I haven’t met many me/cfs people who truly do…we just endlessly adapt and re-adjust to our limitations. Sorry if this post seems negative, it just seems like we are the longest long haulers out thereReply

  • Cort Johnson
  • Cort Johnson on May 7, 2022 at 9:28 amWe are the really long, long haulers for sure! It’s really something to ask of a community that has been waiting for so long to wait longer as another similar disease gets the attention and gets the funding that we’ve been working towards for so long.I mean, c’mon! That’s the place we’re in, though. We just have to keep reminding ourselves that the long-term trends are good, that what benefits long COVID is going to benefit us, and that in the end, we’re going to reap real rewards from all the attention given to long COVID. In other words, we have to still be patient.It’ll be interesting to see how many people with COVID-19 come down with ME/CFS. It was always going to be a small number – 5%? 2% 1%? – but so many people have come down with COVID-19 that the total number looms large indeed.
Success! Nath Reports the Big ME/CFS Intramural Study Points to Possible Treatment Options

This just re-affirms my feelings that the NHS seems about as helpful as the NIH (NOT!) with their ‘advice’. I find it morbidly amusing that they say restrictive diets are not good for ME/CFS…Gee, I wonder what they would suggest those of us with massive food issues should do? My stomach has been upset for over a month. No Birthday cake for me this year. Mom was going to make me gluten free chocolate cake. It is still on her kitchen table. I don’t dare eat it. Instead she made me bannana ice cream, which is good, but it is not cake. Sometimes I eat gluten free bread or a gf bagel and that is kind of a treat now. On the plus side, my stomach being at war with me is good for weight loss… I did need to lose weight and I am on an excellent protocol for that. I really never appreciated how much I liked the freedom of food choices. I guess its true what they say, ‘you don’t know what you’ve got until you lose it’.

| jess

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/