We MISREPRESENT people with ME & Long Covid

Myalgic Encephalomyelitis (ME) is one of the most disabling conditions on earth. It affects 1/250 humans. Most ME patients are women (75%).
The term CFS / Chronic Fatigue Syndrome is unhelpful, and I generally refer to this condition as ME.
I am sadly aware that many patients with Long Covid are joining the ME community.
MEpedia entry on ME - me-pedia.org/wiki/Myalgic_enc...
MEpedia entry on cognitive dysfunction in ME - me-pedia.org/wiki/Cognitive_d...
My Twitter: where you can find my Twitter diary on living with Myalgic Encephalomyelitis is up to 150 episodes - / vladvexler

[@pa6370]

I was lucky, to not have long covid. But for 36 hours during covid I was mentally impaired. I was unable to write whilst talking on the phone, I suffered memory impairment, I could not plan, organise or perform basic tasks. I had never experienced anything like it before and hope to never again. I believe studies are showing that covid has effects and mechanisms causing mental impairment very similar to minor strokes in some people. I'm so lucky to have hopefully made a full and fast recovery, at the time I was sure that I was heading down a dark path. Prior to my experience I struggled to understand long covid and the mind fog - after my experience I now have an empathy for those suffering long covid and wish them a full recovery. I am a person that perhaps sometimes needs to have my own experiences, to understand and empathise with people suffering. Thanks for doing what you do Vlad - and you do at lot!

[@gabriellerose3839]

I had ME and fibromyalgia before I got Covid in January. I now have long Covid exacerbated by the ME and Fibromyalgia. I guess I was a sitting duck for long Covid. 😢. I get it. It is what it is. I don’t have to validate to anyone. It’s energy wasted on someone who is not worth knowing. I’ve become acutely aware of my energy - how much I have, where it’s located, the times of the day when I have more or less energy and where I will expend it - so very aware of people who sap my energy as I don’t have much to waste on these people. Much love and understanding Vlad ❤ I hear you.

[@emmajk7433]

Your videos make me want to understand so much more about ME and Long Covid. Thank you for them.

[@VladVexlerME]

Hope you are doing OK Emma!

[@emmajk7433]

@@VladVexlerME I am doing okay, thanks 😊 x My sons are full on but truly are the joys of my life

[@PandemoniumMeltDown]

@@emmajk7433 😃

[@piccalillipit9211]

Imagine having the energy sucked out of you on a molecular level. Its not like being tired or exhausted [for me that is] its like you have a Litium battery pack that is nearing the end of its life powering your body. Yo set off in the morning feeling fine - 100% charge showing and 90 minutes later its flashing red "10%" and then just switches off. It can be half way back from the shop and it switches off, like an old iPhone. Then you have to make it back home and its like running in a dream where you dont get anywhere. And yo have overdone it, so you cant get out of bed for 2 days. Some days you have no thoughts in your head, no opinions, nothing, just space... Today I have pain, knees, hips, lower and middle back. Hurts too much to walk, Im actually quite good with the pain, normally it does not bother me but this is extreme. This is my life for 3 years with Long Covid. I used to be in the gym 6 days a week, run 5km a day with my dog, I was writing a book on getting fit over 40 when I got Covid in Jan 2020. Ive got past the feeling sorry for myself bit and just accept this is my life now, I enjoy the good days and ignore the bad days.

[@PeppermintPatties]

Yes, and me. Thank you for being seen, Vlad. I wish you health. X

[@69birdboy]

You're a quite literally the most eloquent, incisive and empathetic orator on the subject of m.e. Thank you for legitimising us. If you weren't I'll yourself you should be our spokesman. You're that good. No pressure

[@websurfer5772]

Here! Here!

[@darrenislar1053]

you're damn right. A friend of mine once said: you, chronically fatigued? See yourself, you look/are 'normal' ... I don't believe we had any contact after that anymore. 'The others' don't see me while they are not there .... And as for the medical profession ... oh yes, they would calculate my situation in, showing however that they had no idea what they were talking about (trying to make me do a lot of things so I would be so tired at night that I would sleep ... NOT; or suggested to read books and watch television to get through the day ... I was so tired, I could only watch the ceiling). And that was on the ICU where you as a patient have very little control over your life. Although they were all very nice and in all other ways cooperative ... I was so glad I went back to the ward (where nurses were too busy to make my life hell)

[@websurfer5772]

What a nightmare we're living in. Glad you got to get out of the ICU at least.

[@lgude]

I noticed this phenomenon when Jordan Peterson was very I’ll after he had come back from Moscow and needed to sit in a sauna and walk several miles every day before he could work. I heard several of his friends in interviews talk right past what he was saying about his condition and say they were glad he was getting better. Love him or hate him, this was an astonishing public demonstration of the inability of many healthy people to acknowledge another person’s illness. I have felt this discomfort myself and have tried to just stop and shut up and accept the suffering the other person is experiencing. I no longer run a mile, but it is not easy. So this comment is my attempt to acknowledge your remarkable way of living a productive public life despite your illness.

[@emom358]

I went from hiking and rock climbing, to Covid 19 (March-May 2020), to long Covid. My doctor seems to want to work on each symptom separately, when I try to tell him that I think a whole body approach would work better. I'm currently looking for another doctor.

[@yuppers1]

Maybe look for a functional medicine doctor? They work in systems. For example you can see some on the Dr Mark Hyman channel- people like Dr Elizabeth Boham and Dr Todd Lepine

[@websurfer5772]

There is no cure for us whether they see the whole illness at once or only in parts. I use herbs and homeopathy. Tinctures, teas and body rubs. All we can do is treat our symptoms. We don't need a doctor for that, we've got the internet and places to buy ingredients like etsy.

[@heretoday788]

Had a high school friend come out to visit a few weeks back. She said that she didn't know what she could do for me. She works in the medical profession. This video says it all, just acknowledge my experience without exceptions/caveats/disclaimers. She told me the doctors she works with would never treat ME/CFS patients in the way I described. It's literally blinders on and followed up by messaging me about a book about somatization.

[@websurfer5772]

OMG. Well, you can't be friends with her anymore now, can you? I'm so sorry. That is extremely messed up.

[@heretoday788]

@@websurfer5772 - Well, would it surprise you to learn that they are now dealing with Long Covid? Still receiving plenty of medical care and diagnostics, but that will dry up in time as most of us learn given enough time sick. It's a new reality being on the other side of health.

[@websurfer5772]

@@heretoday788 Sounds like instant karma, but this is something I would never even wish on my worst enemy.

[@heretoday788]

@@websurfer5772 - Same. It's sad those of us that try to talk about the reality of chronic post-viral conditions are dismissed. I want to see the end to these illnesses.

[@websurfer5772]

@@heretoday788 Yeah. I sure didn't want to see more of it. I feel like I'm in hell. I'm just gonna make the best of what I can though. What else can we do?

[@martinoamello3017]

While I've not been diagnosed with anything worse than congestive heart failure which is pretty bad on its own I have other issues in my legs that gets just a tiny bit weaker every day and has been for years. It's well passed profound at this point. Anyway, talking to doctors about it? I might as well make an overpriced appointment with a doctor to discuss the weather on the other side of the world. It's been like this now for over 20 years. I've ceased to care or even mention it with them. Try a history of heavy duty drug abuse at any point in life. It remains on your medical history FOREVER and there is no amount of pain sufficient enough to warrant medication to help.. Just generally griping Vlad..I hear you loud and clear.

[@websurfer5772]

That's awful. They want us to do ourselves in. I read about it online before they purged the web of what they're really up to. Hang in there, man.

[@rumination2399]

People see what they want to see. Reality contains too much horror for people to want to face it. Loneliness isn’t solitude. Its having no one to listen to the things that matter to you.

[@PandemoniumMeltDown]

Often. But we're all limited by what life, and we, made ourselves. We all focus on different things in different ways, different interests, different brains, different everything. I was raised a stranger to all outside my family. I moved too often. It gave me a way to interact with life in a competely different way than most people. I had to be lonely and not be destroyed by it. I think I made the best of it. We are completely different, yet very similar: we are here, we give a damn. When I read what you wrote, I'm not looking for something, so I can see. I'm glad you're here, there is so much to learn. All the best!

[@rumination2399]

@@PandemoniumMeltDown thanks. I’ve heard it said that pain is the gift nobody wants

[@minketheodora]

A short time ago , i had to go into hospital, and met ofcaurse the most wierd and wicked patients and sufferors of god-knows-what-conditionings,. I was sleeping in a room with 3 other women, and they started to talk from 6. o. clock in the morning, until 12 in the evening, about; sickness, medicines, docters, nurses and treatments,.,. I was laying half dead, but the ladies chattererd on for days one end,.,. Later i met them more closely, and heared their years-taking illness journeys,. ,...Most of them where talented and gifted, but somehow all these qualities where absorbed by trying to coop with their misery,.,...I just was alert of what they realy said; and almost every-one said;'they dont hear me, they dont give me the right attention, they dont believe me, they dont care for me",.

[@sdzielinski]

My physicians do not hear what I say and who don't much understand long covid. I'm very upset about this because they are costing me money.

[@websurfer5772]

They can't help us. They're clueless. Hang in there. My suggestion is to Google your symptoms and try natural remedies for them.

[@sgordon8123]

I recovered from long covid by treating it as MCAS ... See KZbin on this. I took lots of vitamins, ate only fresh food (low histamine diet) and kept this going for six months.

[@dujestancic7758]

I ll tell you whats been troubling me as primary care physician- GP. In my country Croatia we are charged for determing payed sick leave days for patient for a particular diagnosis. From 0-42 days employer pay for the patients sick leave. After 42 days state health insurance pays for it. State insurance control agents start calling me after 42 days and check on each sick leave. They actively put pressure on me to send people back to work. The problem is that patient report pain and hurt but objective signs are missing, so they need to be send to work. This puts me in terrible bind. If they are unable to work after couple of years there is a law for the patients to go early retirement, but my country has a quota how many people per county can go to invalid early retirement- its called this way. So these patients get denied for going to early invalid retirement, because quota for this year has been fullfilled, and they stay on payed sick leaves for years. In the meantime as long as they are on payed sick leave state health insurance agents keep bullying me to send these people back to work. Once patient needed to appear before a health insurance comission every three months for them to determine if the sick leave will continue. These comissions had regular threats of bomb usage or people killing them for not extending their sick leave. So health insurance company concluded lets put all responsability to GPs and unleash our hound healthcare agents to threaten >GPs. This makes me sick to the stomach and seeing in every patient potential dragg ass who doesnt want to work. >There are some people with ME and long covid who abuse the sick leave system, so all patients with these conditions get put in the same basket. So simulator patients+ state healthcare insurance attack hounds/ inspectors reduce empaty of the healthcare staff

[@websurfer5772]

Nobody lies about having ME though. No way. I'm sure you wouldn't believe I have it either. I've had many doctors who don't believe me here in America. If you harass patients like me because your government tells you to, then maybe you should consider a different profession, because from my perspective, it's like you're working for Satan. Also, could you try breaking your text up for us, please.

[@allisonandrews4719]

ME/CFS gets it the worst, NOT that it is a competition. I have had my own “nonspecific” fatigue issues (not ME/CFS in the end but everloving gut-migraine weirdness) and if I haven’t seen it all, I’ve seen enough to be glad to be feeling a bit better now. My challenge is less not seeing ME/CFS and more not pushing all my weird neuro-remedies on perfectly competent people with other neurological disabilities. Boundaries. They’re good and good for you. But ME/CFS is real, it sucks bigs time, and your friends and family still need you even if they also need you to leave them alone so they can lie down.

[@conniepr]

How do you help someone when they can't get up out of bed or lying on the couch? She says her joints, nerves, and muscles hurt, even her skin as she points to her forearms. They look a little puffy and swollen to me.

[@websurfer5772]

Do whatever daily tasks you feel you want to do for her. We need people to bring us food and tea, ideally. Other than that, if you believe her and care, you're already way ahead of most of humanity, and you're worth GOLD to her.

[@frkk6933]

Because it's psychosomatic.

[@sueklausshow]

Go ahead and read the over 5000 studies that show it is not.

[@frkk6933]

@@sueklausshow I did. But not all 5000, you're right. But there are so many examples of people who have been recovered. Me include. It's only a matter of time.

[@sueklausshow]

44 years, still waiting to recover. Cdc.gov, see articles on it there.

[@negy2570]

Psychosomatic is just the label for "I don't have a clue about, nobody has, it's known condition but never found a cure, nobody cares enough to pay for reasearch, so it must be YOU wanting this condition. Are you looking for attention?" There is a lot of poor medical research AND disclosure. Anytime some detail and possible cure is found it takes 10 years to come to public knowledge and then it is ridiculed by medical system as inconsistent. On the opposite harsh meds with side effects get pushed. The more side effects you get, the more it is YOU having a problem. It's basically a gaslighting backed by decades of silly new age stuff prompted by people who are self-educated teachers of something, runaways from institutional churches looking for their own little glory and then the medical staff smelled the business and the extreme cruel relief of telling someone "it's all in your head, next!" It's a global discharging of any possible responsibility. If you want to tell someone that term "psychosomatic" you need to be ready to solve that psychosomatic problem or just be honest and say "we don't know".

[@websurfer5772]

@@frkk6933 Okay, then it was psychosomatic for you. Not ME.