Why we should SPEAK UP for Myalgic Encephalomyelitis

[@PeppermintPatties]

I don't have ME, but I am disabled and agree that we need to speak up if and when we can, and be seen. According to the Scope charity, there are around 15 million people with some kind of disability in the UK alone - around a quarter of the entire population! It's time for us to be seen, understood and accommodated. It's about equity, being and feeling included. I wish you health, dear Vlad. X

[@elsagrace3893]

What does ME look like? At my worst I had lost muscle but doctors had no idea what I looked like before. To them I looked like the average 23-24 year old woman. I was very thick with muscles before ME. It’s impossible to convey to doctors who saw me as looking normal and healthy that I did not look normal and healthy compared to how I looked before ME. I really have livid hate for doctors in this regard and also in their shit communication abilities.

[@paulstuart551]

ME, also known as Chronic Fatigue Syndrome is defined by having generalised pain, severe tiredness & an inability to concentrate - many things can cause these for short or long periods like viral or post viral conditions, they almost always improve over time. If you are truly concerned about severe muscle loss there is an easy blood test used in muscular dystrophy that shows a very high rate of creatine kinase, an enzyme which is caused by muscle loss..

[@DJDOGGYMOM]

You are definitely so right about speaking out about your disability! I am also disabled to a much lesser degree than you, but for years did not speak out. In 2020 that all changed and I have taken back control of my life. Such a great burden was lifted from me in doing just that one thing! I now live my life with joy unfettered by grief and depression or anger!❤😊

[@zalishaabdool6671]

TO BE SICK!! AND CANNOT EVEN SPEAK!!.NOR DO ANY THING FOR YOURSELF...IS INDEED!!...A STORY!! TO TELL..WHEN YOU ARE BETTER!! May You Always Have Good Health!! Amen!!

[@VladVexlerME]

Thank you!

[@zalishaabdool6671]

@@VladVexlerME I Think Of You Often!!...I Am Contented Because Coming Out Of.. Long Periods Of Silence!!.. IS ABOUT... ■ABUNDANCE!!■...OF... SORIES!!!!!!...BUT TO BECOME... "FULLY ALIVE".. AND... READY!!..VALD!!..The first Time I Saw You!! Speaking!! On A Video! !...I Was Energized By Your Speech!!.. ■YOU'D NEVER UNDERSTAND?■ Which Came To Me!!.. As ■"TRUE!!.. PERFECTION!!"■..I Mentioned That To You!!..I HAVE GREAT ADMIRATION FOR YOUR... CONTRIBUTION!!..TOWARDS.... ■HUMAN-- WELFARE!!■...Even 1 Of Your Video!!...I Like A Thousand Stories Told!!...May Allah (SWT)... Keep Sending The Angel Who Brings Revealations To You..■The Angel Gabriel■..And May He Give You!! The Ability!!.. To Speak!! To The People!!..YOU DO HAVE INSPIRATION!! SENT TO YOU!!..Insha Allah..Means.■God's Willing!!..Amen!!■

[@PandemoniumMeltDown]

I don't have ME. I've met many people who had Covid and developped ME. They don't know they have ME. I know many (most) people know nothing of ME. I'm learning ME, thanks to you and your beautiful community. I like to spread awarness and solve problems. I feel priviledged to be me and to be here. Now, you can't count on me to shut up about it.

[@flagmichael]

(I am not a sufferer.) I fully agree the time to get this mysterious malady figured out. 35 years ago a friend was effectively disabled for 3-4 months with ME after mononucleosis; another coworker was eventually diagnosed with fibromyalgia (now in the ME spectrum) and many doctors considered it a bogus condition for more than a decade after that. I haven't met a Lyme sufferer but I know that is another trigger for this maddening condition. Now we have more PASC than we can measure. I can recommend two more channels that are grinding forward: the PolyBio Research Foundation channel and Gez Medinger's "RUN-DMC / Gez Medinger" channel. I am not including links because it appears YT bots are deleting comments with any links in them. Anyway, both of those are shining lights into dark areas.

[@lindakelley2676]

Covid on top of ME is a nightmare.

[@moserboser]

Thank you so much for this video.

[@alanjhaugen]

Excellent.

[@emmajk7433]

Hi! Great video! How can we support these conversations to happen to support those with ME? Thanks!

[@VladVexlerME]

Just talking helps! And now it’s a good idea to recognise how many people have Long Covid - much of it is just ME.

[@Focke42]

oh another vlad-channel:) A little story not to ME but to depressions, so CW depression-thingies: I remember (being very pissed of by) my first girlfriend had to justify herself, "because" of depressions. The conversation always gone like this: "Oh well, why cant you just do this? Ah you have depressions, oh then its ok." I always was very irritated, i didnt understand, why she had to disclose, what problems she had, before she was allowed, to expect not getting any pushback :( Also words are difficult.

[@VladVexlerME]

Thank you for sharing

[@zalishaabdool6671]

Patience Is Better!!.. Ignore What You Don't Like 💯..And Better Yet Say..'I What To Choose Something Else" Something To Express Happiness!!"..Life Has Its Challenges

[@EffequalsMA]

I get it, I've had seronegative Rheumatoid Arthritis all my life and it hits hard in weird ways, physically, cognitively, psychologically. I deeply sympathize with people like yourself that suffer from another incurable disease. I am fortunate, at this moment, that it's under control but, the dragon can fly out the mountain at any time and burn the town down.

[@mickparkinson207]

Applying for industrial injuries benefit I was having a good day able to walk without crutches an inch thick file 3 years 118 doctors consultants procedures rendered my CRPS with little hope of remission doctor told me despite all evidence I was 38-42% disabled they would rate me under 14% so not having to pay £11.80 a week aprox.. she then proceeded to inform me on next attempt to cry and pee myself slightly. Life every day alive is a blessing when you realise as bad as the pain may get or the loneliness there are millions of others far worse than ourselves. (Maybe God decided I required a lesson in humility)

[@victoria.xseven7913]

I hate doctors and government for these things so much. When someone is too ill to gather evidence or offer proof and all they do is try and mark you down to save money. Easier to "work" even making yourself iller, because that's what they want you to do anyway.

[@serious4170]

Thank you🤗🥰❤You are absolutely right, I'm fighting on my second year and have still not ben recognised as a sufforror after covidvaccination with ME. I've ben thru 7 speciality doctors in Denmark. Also the danish doctors are ignorant, and I've my self ben studing medicine🥲. In Denmark you are being tought thats it's a psychiatric dissease🙄.

[@tamarapalmeirat4486]

✨

[@elsagrace3893]

Why are all these comments so weird?

[@flagmichael]

Because ME is so weird. It has been around for a long time - probably as long as primates have been around - and we still don't know what causes the array of symptoms. It is almost like having a discussion of life, love, hate, or death.

[@Fanaro]

1:00 This "yeah but" is clearly a scale or non-linearity fallacy. Different levels of intensity might have completely different nature of consequences, it's not a linear process. I wish people realized that most things in this world are actually non-linear, and so analyzing them with a linear lens is borderline toxic.

[@PandemoniumMeltDown]

Yes, people are ok with a quest having a million steps and side-quests... yet, life cripling "invisible" conditions should be simple, straightfoward and easy to "solve". An insult to intelligence and to life itself.

[@SlpBeauty333]

One of the best things that have helped me to communicate with physicians is to keep a record of your symptoms if you are able. Habit Hub is a great app that you can customize and it's minimal to keep up with, you just have to design your habits and then click to mark off if you've done it or not. I have a habit for painkillers and I'll usually put what the source is, if I have any idea what made it worse. Lots of love from NYC ❤️

[@alyssawoodruff600]

💯

[@grantburrows7297]

I've received advice from respected friends about undiagnosed afflictions to see a Chinese medical doctor (or maybe even Vedric by extension?).

[@flagmichael]

The big problem is that _nobody_ has effective treatment for ME/CFS. There is almost certainly more than one cause and will need more than one remedy.

[@Grace.allovertheplace]

🩵

[@bitegoatie]

Is ME being treated in the UK primarily as the domain of psychiatry? If so, that would be stunning. Whatever the answer to that question is, I am interested in your care. I wish you would contact me by e-mail, at your convenience, of course, and share with me some detail on your medical care - at whatever level of detail you feel comfortable discussing it. I would like to know the standard of care there, and, beyond that, to compare experiences. My own bouts with this were precipitated, as they often are for people living with ME, by the stresses of other illnesses. In my case, they were multiple and severe. While I have minimized the ME symptoms, another decline into lurks behind every daily struggle with a new exceptional pain, every sleepless night (from pain), every nagging illness that knocks me out because of the weight of my several other autoimmune and metabolism diseases and my partly broken anatomy. I see my ME experiences were somewhat different from yours, but there is enough familiar that comparison between differences in care of two philosophers with interests in politics and music, in two different countries, might be helpful in both directions. If you can’t find the energy or interest, I understand. Semirandom web solicitations of personal information should be treated with care, even by people with plenty of time and energy potentially to waste. For my part, I go for long periods when I can’t even tolerate watching videos, and I have little time as a partly functional person with energy for anything requiring effort. So there is no pressure. I will watch when I can either way.