Thanks for posting and thanks for all the important work you do.

Yes, I agree and sadly I know this from many perspectives. The average diagnosis time for #ME takes 7 years, depending on the study. Maybe #LC has raised awareness as the severest forms lead to ME and the timeline will improve. I have a goal to reach the youth before they become severe.

Great visual for the lives of people with #ME. Most people in a mild state of #ME are “faking well” to try to live a normal life…. It’s so tricky when you can almost feel it but it’s not quite in reach.

I am not giving up on myself or you!
#ME #LC #FM

I love my family, my life and my work.The struggle to get from severe ME to mild is real and reclaiming participation in society is hard won.I am less lonely, but when I’m tired and not able to do what I want to do, I am still lonely.Despair and loneliness is how I would describe the feelings of ME.

Great response. Thanks for using your energy to do that.

Am I the only one that noticed Trump say he is “not allowed to drive” yet he runs the USA? Is his licence medically restricted? He has not driven in years he said….

Rubella vaccine is given with measles generally. I had a young man in my practice with congenital Rubella syndrome. His life was very hard - almost blind, deformed short stature, cognitive challenges, and more. He accepted his fate and he died young. I know he wished his mom was vaccinated.

Like him or not - Macron is trying to sort out Trump in a friendly manner with facts and actually got some conversation going - good on him.

Probably you all knew that already but just in case it helps a fainter, or an observer who is assisting a fainter, thought I would mention it. And who cares how it looks to stomp your feet on the ground while laying down - beats having a broken nose, soiled pants, sprained wrist, concussion, etc.

Sometimes they have to repeat the process a few times before the autonomic system balances out again. Of course taking your time afterwards before getting up and salty fluids/electrolytes help if handy.

You all may already have your trick but when this is occurs in front of me I get them to lay down AND stomp their feet HARD on the bed or ground (if they are still alert). This engages the sympathetic system to raise the heart rate and has not yet failed to stop an event in progress.

Yes - Fainting with #POTS is a heath risk - sprains and contusions, but I have also seen fractures (noses)and concussions (on brains that already suffer from lack of perfusion). It’s a warning flag which requires attention in the immediate state and possible investigations.

Thanks - that works

I tried each link to the publications but none of them brought me to the page. Could you double check the link? Or maybe it was just me…

That his absolutely no surprise to me. My #ME was undiagnosed prior to chemotherapy. In retrospect I had mild ME until chemotherapy put me in the #severeME category. I’m sure it’s more common then we think but no one has done the study. #LC is shining the light on neglected and maligned #ME.

My marriage did not survive.To be fair, there were problems at the outset but as I got sick with #ME there was no compassion for me with my illness and no support in the marriage for me to begin the journey of healing. It’s been a journey. Friends and family still present are cherished.Chose wisely.

Office conversation:
Why don’t you send her to an #ME specialist to get a proper diagnosis?Colleague- What can you do for “those people” anyway?
Look him right in the eyes - You know I was in severe ME and here I am working. Give her the respect she deserves.
Colleague - Right, where do I send her?

This is fantastic. It’s one study in the right direction.
Appreciate your work of following and highlighting the important studies.

Oh, the pain of it all. I have no words. Grateful for what I have but the tears can’t stop flowing today.

Oh this is heart breaking. A life lost because of frustration over lives lost to post infectious illness. I’m very sad for the family of the man shot but equally sad for the young man who has been loosing his life for years.

Sign me up! Another round of chemo will probably make my #ME severe again for another seven years - just can’t even handle the thought of that - let alone breast cancer recurrence.

Zero opportunity despite asking.

Thanks for posting.

Myalgic_encephalomyelitis/chronic_fatigue_syndrome Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, sleep issues, and problems with memory or concentration. Further common symptoms include dizziness, nausea and pain. The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity. This "crash" can last from hours or days to several months.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, sleep issues, and problems with memory or concentration. Further common symptoms include dizziness, nausea and pain. The hallma

Just feel so sad when I read these old papers that state the same issues and data points that we are still at now with #ME. Come on science/medical team - we can do better.How many more lives wasted, careers not had, hours spent suffering alone in bed? Where is our collective societal conscience?

Really appreciate the factual historical documentation which puts in to context our current day experience of #ME in medicine.

Really appreciate the factual historical documentation which puts in to context our current day experience of #ME in medicine.

They say the same thing about/to physicians with #ME - just saying. Had to diagnose myself and research where to get treatment. Constantly correcting well meaning “advice givers” who think I’m afraid to exert myself - would give anything to climbed mountains and run marathons again - or just walk.

That’s a great set of slides. When I am seeing patients that have been diagnosed with chronic pain, depression or anxiety my antenna is up to look for #FM, #Longcovid or #ME that has not been diagnosed yet. The symptoms of fatigue and PEM often get whitewashed and brain fog is downplayed as stress.