PEM What is your reaction? A new study from the Netherlands

I read the article and feel as hopeless as you do... I've had LC since Jan 2020 and the vibration since July 2021... at 76 it looks like there isn't much recovery in the future for me...

The study's findings are profound.

Please don't take away a sense of despair. Remember that everyone is different, and LC itself seems to have different causes, which suggests the possibility for many therapeutic approaches. Also, the article does not shut out the possibility of gradual, gentle increases in exercise to improve LC:

"Systrom says it's possible a subset of these patients may benefit more than others from gradual exercise, especially after successful medical treatment has been first established."

I believe that gradually increasing cardiovascular exercise helped shorten my long covid disease, and my long covid clinic (UT Health in Austin, Texas) pays attention to its patients and what works, as well as keeping up with latest developments in the field. That's the point of long covid clinics--to gain clinical experience. They do learn, and they do help.

I and others have said this here before, but despair and depression are both understandable reactions to the burden of long covid and actually symptoms of long covid. But depression can be treated, and we have the tools to suffer less! One of the worst parts of depression is the lack of energy to live your life, and medication can help with that. I'm not ashamed of saying that I am on antidepressants, and I need antidepressants to live a meaningful life--maybe not joyful and happy all the time, but depression kills your soul. It is absolutely not healthy physically, mentally, or spiritually. And it can be optional.

Finally, this JAMA study from last May hasn't been mentioned recently: https://www.nih.gov/news-events/nih-research-matters/toward-deeper-understanding-long-covid. The researchers proposed a scoring system for diagnosing long covid. At the top of the list was Post-Exertional Malaise, which the researchers defined. It seems that PEM is among the most common LC symptoms, and anyone experiencing it should read up on it.

Yes, some of this information is very discouraging.

We can't give up hope. Let's try to find some encouraging bits.

Seems like medical knowledge is moving in the right direction now, at least.
It's great that now there is proof that we are not lazy, nuts, or whatever else we have been called because of our fatigue.
It's great that they will stop telling us to do stuff that actually makes us feel worse, like "exercise a lot more and you will feel better."

The NPR article doesn't mention it, but there are Long Covid treatment centers that have developed a plan to slowly increase movement to increase energy. Maybe another member can give us some links to resources about it.

I hate "toxic positivity" -- saying everything is/will be okay, when clearly it is not. But total pessimism is equally bad for us. We have to try to be realistic.
Another member posted on a different thread something like this: a realist sees that the glass is half full, but there's still water in the glass until it can get refilled.

If you are religious, remember that hopelessness and despair are two of the devil's favorite tools.

Here's looking forward to medical progress! Hope we all can have a decent day today!

With the information from this study I would like to state that the CMML I have been diagnosed with could also be a result of my long Covid!! The hematologist’s answer when I asked about my theory is “I work with blood not Covid . “ please is anyone else being told they have leukemia?? If Covid can tear up mitochondria in such a fashion could blood conditions not also be caused by Covid ?? Abnormal cells etc.. will it never end!!????

It seems for some of us it will never end.

Hi All, I have read both articles and links from the Nature article. Discouraging, yes, but also, encouraged by the research that is finally happening. I have experienced PEM for over three years, however, this fall I was finally diagnosed with POTS, Since beginning treatment with Mestinon, I am doing so much better - walking distances at a good clip; completing household chores; restarting my aerobics class, etc. My Neurologist stated that I would be on Mestinon for the rest of my life - the bad news, the positive change is the good news. I still have trouble before my AM and PM doses, along with headache, vision and GI issues, so this treatment has not solved everything. Best to you all. in your search for solutions leading to a more satisfying life style.

I don’t know if it’s any better or worse of a diagnosis but after being diagnosed 2yrs ago with Long Covid and last year with PEM, now I was diagnosed with fibromyalgia and read that 60% or more of long covid patients actually have fibromyalgia rather than Long covid/PEM.
If you look up fibromyalgia symptoms and see if the list fits your life it may be something to see a Rheumatologist about.

Hi okradurham,
Isn't this an awful club to belong to?
Your hematologist sounds like a lot of specialists I have been to see-- they won't consider anything outside of their specialty silo. Your guy's answer is an especially irritating-- and almost insulting-- example of it.

That said, your hematologist may just be a great hematologist anyway. He may not give a hoot about *how* you got it. You have it. And he wants to focus on *how* to get you better. The cause of it may not matter to how it is treated.

He sounds kinda like a jerk of a person but he still may be a really great hematologist. I had a surgeon like that; no people skills, great surgical skills. My feelings can heal a lot faster than my innards! However, I wouldn't go to a primary care physician who spoke to me like that, since the patient-primary doc depends on good communication.
Best of luck to you!

I was diagnosed and have been treated for fibromyalgia long before Covid. I, also, had Chronic Fatigue Syndrome. Lucy