Do other long haulers suffer with brain changes? Seen any improvement?

I empathize and sympathize with you. It's and up-and-down world. I try all sorts of mini exercise routines and stick to what works. The idea that you
build up your body in totally wrong. Doctors seem to forget about the term post-exertional malaise. However, that's at the heart of the ME/CFS problem. I can do strenuous exercise, but then I pay for that exercise for the next three or four days with aches, pains and generally sick feeling. However, the medical community for the most part chooses to ignore this fact. Unbelievable to me, since this is the sign post. Small spurts of exercise
seem to work best. Also, exercising while sitting down works well. All I can say is good luck to you and maybe someone will take all ME/CFS symptoms
seriously.

Did the specialists help you at all? Any suggestions? I am also a sufferer of CFS after mono. Life is completely altered. I agree with everything you wrote. We are “ the forgotten ones.” There needs to be a documentary about us - anything to focus attention on this miserable condition! If I didn’t have a supportive spouse, I would have checked out of this world by now.

So glad to hear from someone who feels the same way. We have to put our heads together and come up with some way for more medical recognition.
The ME/CFS PR is terrible. I write to the group and tell them that each year. I live in the third largest city in Georgia and there's not one word on TV or Social Media. I simply can't understand what's been going on for the past 40 years. I did have three wonderful physicians who paid attention to what I told them . They retired about 4 years ago. Primary care people keep doing blood tests. Experts keep doing blood tests. There has to be something more medically creative. I don't know what it is. Perhaps we can convince some program like Frontline on PBS to take a close look at what's going on.
Truly, no one seems to care deeply enough. Who knows what proper research would uncover. Each researcher seems to be taking their own trip. Nothing is unified. I'm open to all suggestion so keep in touch.

Our brains are working exactly the same. I’m tired of the bloodwork that reveals nothing. I’m tired of being passed on from one doctor to the next. I live in a small city in New York, but even after going to the Cleveland Clinic I have no answers and no direction. My husband is a heart attack survivor and my sister is a cancer survivor and they can both run circles around me. There was treatment and they got better. No treatment for me, and no one cares. What has been going on for 40 years? I think it’s time to speak out - loudly. But to whom? We need someone with a connection. That seems like the only way to get things done. The author of Seabiscuit and Unbroken has ME/CFS. We need her because she’s famous.

I know just how you feel. Perhaps we have to form our own group somehow. Perhaps we have to reach out to other ME/CFS patients. I'm not sure how since I'm not that handy with the internet. A ground roots group seems more and more like the only way to make any headway, to get someone,
somewhere to listen. The major researchers seem to be interested in research not living, breathing people whose lives have been damaged. We are not numbers. We are individuals who have been robbed of normal lives. Our personal relationships and our relationships to the communities we live in have been cut short so we really don't count anymore. Damaged goods. Disappeared people. It's time for us to speak up and get help somehow. We are not the same as the Post-Covid individuals that the top researchers want to lump us with. ME/CFS may be a post-viral syndrome but it didn't arise
just when post-Covid or long covid did. We deserve to be in our own category. We deserve own care and concern. We need to unite. We need to find someone with internet savvy. Most important of all, we need to find someone who really cares about us as human beings whose worthwhile lives have become nearly worthless in the eyes of society. On this very Mayo Clinic site, there is no ME/CFS Connect site. This would be wonderful way to start the ball rolling. So I ask the Mayo to think about how they help. I ask them to listen to us, too take another look. I appreciate your response and hope others will also respond.

@nataliem and @petuniamom567 indeed there are a lot of similarities between MF/CFS and long COVID. I can see why these discussions are of interest to you and how your experiences can contribute to fellow members seeking answers and recovery tips.

ME/CFS is a real syndrome and a condition that is treated and researched at Mayo Clinic. Patients are listened to.

Mayo Clinic Connect is pleased to offer space in this community platform so you can continue to connect with other people living with ME/CFS. Currently ME/CFS discussions and members can be found in the Just Want To Talk group https://connect.mayoclinic.org/group/other/

Pop over to these related discussions to stay connected, start new topics and meet others like you:
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/?pg=5#comment-687207
- Help with Chronic Fatigue Syndrome https://connect.mayoclinic.org/discussion/help-with-chronic-fatigue-syndrome/

Look forward to creating this group with you.

Have you or @nataliem ever looked into https://solvecfs.org/?
Might be a good place to start looking for a support group, or research studies.
Sue

Thank you for this resource that I did not know existed. I feel slightly more hopeful, and I will be donating to the cause!

I'm glad to hear it - I was reading a little there, and you should be able to connect with others too - if not directly, maybe by following links.
That was how I found Mayo Connect when I was diagnosed with an uncommon disease.
Sue

Welcome @heavnly4. It sounds like you had a very stressful job. You are still that strong, smart, capable woman, but she needs some time and patience for recovery. As you'll read from other members in the longhaul group, it's a slow process. In terms of shedding some light, I think you might appreciate this blog post from Dr. Van at Mayo
- Early Care Tips for COVID Longhaulers https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/early-care-tips-for-covid-longhaulers/

You might also appreciate tips from fellow members in this discussion, especially to help manage those anxious moments:
- Deep Breathing & Mindfulness Class: Anyone else having success? https://connect.mayoclinic.org/discussion/deep-breathing-and-mindfulness-educational-class/

Heavnly, have you sought care at a Post Covid Clinic?