Recognize M.E.

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This powerful piece, delivered by Doctor of Physical Therapy Clayton Powers, recognizes myalgic encephalomyelitis (ME/CFS), a condition often misunderstood and overlooked despite its profound impact on millions worldwide. The video delves into the daily struggles faced by individuals battling ME/CFS or post-COVID related ME/CFS, emphasizing the immense challenges posed by extreme and all consuming fatigue, metabolic, neurologic, and immune impairments, to name a few.
ME/CFS ranks lower in terms of quality of life compared to major diseases like cancer, stroke, and debilitating autoimmune conditions. Yet, it's a condition that's unrecognized by many and often misdiagnosed or dismissed. We want you to know that you are not alone in this fight. Your experiences are valid, and your voices matter.
Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015 Jul 6;10(7):e0132421. doi: 10.1371/journal.pone.0132421. PMID: 26147503; PMCID: PMC4492975.

Опубликовано:

9 май 2024

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Комментарии : 23

@katrinmurnain9197 Месяц назад

Thank you Clayton , very severe M.E/CFS + Fibromyalgia patient here , bedbound and alone by the ignorance and others understanding of this monstrous illness ... it has been 26 years now ... we need help so desperately as we are misunderstood, forgotten and living in hell ... are we Ghost's i wonder ... it seems so , from Kat in Australia xo p.s my pic is 16 years old now and it is a reminder of who i once was ... 💙 my heart goes out to all who suffer 💙 in the words of Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences #MECFS #LongCOVID . “ME/CFS patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.”

@lasarod Месяц назад

“You have permission to rest.” ♥️♥️♥️

@shannoncallister6869 29 дней назад

I’m sobbing right now because I needed to hear some compassion and validation from a health care professional.

@sallierediske6203 Месяц назад

❤ Thank you, Clayton!

@EE-lz7fp Месяц назад

I lost 2 friends of 50 years last week because I objected to finding out there’d be unkind, fallacious gossip about me and ME through a misdirected text. To say I’m heartbroken doesn’t begin to express how I feel. And I know it will happen again over and over and over because that’s what the medical community (these were 2 nurses) thinks and misinformation spreads faster and easier than accurate information.

@Spikypotato. Месяц назад

Thank you from yet another ME patient❤️‍🩹❤️‍🩹❤️‍🩹

@SullyDeRaddo-qi3tu Месяц назад

Thank you so very much for being a voice for so many of us! We need clinicians like yourself and I am eternally grateful for your work on behalf of those of us with this crippling body and brain illness.

@courtneybaker5571 Месяц назад

Dr. Powers is the best, full stop. 😊

@lessons9745 Месяц назад

disabled since 2016 after a hospital acquired superbug infection when I went to the ER with a kidney stone

@jfouts1979 Месяц назад

Thank you for this. I no longer really have any friends...my parents don't understand...my special needs teenage child doesn't understand...my ex-wife didn't understand...vast majority of doctors don't understand...I'm on Medicaid...will be Medicare later this year. After initially applying for SSDI over 10 years ago, and appealing, opening subsequent cases, etc...finally was approved...only with SSA stating they expect my condition to improve (even though none of my doctors do...and that is well documented...)...SSA plans to 're-review' my case in early 2026...I have a housing choice voucher rn, but SSDI is high enough that I will not be eligible next year in 2025. How are people like me supposed to survive? Are there any resources anywhere? I'm in KY.

@CricketGirrl Месяц назад

I was approved for SSDI and had to move to Medicare, too. Before my SSDI, we barely squeaked by, and the whole family was on Medicaid. Now our income is just slightly too high, I'm on Medicare, and I can't afford my meds. This is the first time in my life I've had this problem. And what do we do about it? I can't go out and work to help pay our copays. My husband is my full-time caregiver (I'm Severe), so he can't go out and get a job. It's crazy. I feel worse off now that I have SSDI.

@jfouts1979 Месяц назад

@@CricketGirrl thank you for writing -- at least I am not all alone -- but it feels like I am... Why can't some organization with a relative with ME/CFS create a Foundation that could offer grants?? I'd love to do this, but I am moderate to severe and it depends on the minute...you know? I've been bedbound for a couple of years in the past. I often am homebound now...sometimes I am able to do basic things but not nearly as often as I'd like. I need help with resources - and you do too. What can we do? What can we make happen? I know - neither of us have any energy....I'm alone...my ex-wife divorced me in 2018 because she 'didn't want to be with a 'sick person''....I'm the one that handles all care for my child - which would be exhausting for a normal person...I have nothing...no resources....nothing....if I find anything, I will let you know....but I am completely exhausted from 10yrs+ of this....I hate that people got COVID and Long Covid...but at least there is funding for something similar that might lead to some kind of answers...possibly...I grieve over my old self all the time....I want to eat very healthy...I have no energy to cook...I have no money for healthy groceries...I have to eat gluten free medically...that food is 180% to 540% more expensive than normal food...food pantries mainly contain gluten foods....I get $242 per month in SNAP to feed me and my 13 year old for a month....that doesn't include anything like toilet paper or paper towels....now my amount is being reduced to $13 dollars per month. How TF are we supposed to survive??

@hankwyman5793 Месяц назад

Thank you!

@amyalbers4195 Месяц назад

I have fibromyalgia and after having covid 4x I am positive I now have CFS. I have never gone back to normal. I have the energy of a 70 year old and I'm 57. I work 25 hours a week and am as exhausted as I was when I worked 40. Just sucks because NOBODY understands

@jamesscammell7957 Месяц назад

How do you know what the energy of a 70 year old is ? Your 70 year olds must have been born with ME/CFS. If I at 74 now, did not have ME/CFS, then I’d still be competing in historic racing cars, building them, doing heaps of things with my grandchildren, riding bicycles, etc, etc, etc. GRRRR !

@amyalbers4195 Месяц назад

@@jamesscammell7957 Dang dude, excuse me....damn...