What is ME/CFS? (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

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Myalgic Encephalomyelitis (ME) commonly called chronic fatigue syndrome (CFS or ME/CFS) is a life-altering debilitating disease affecting the brain, the immune system and energy metabolism. The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months.
Severity ranges from mild to very severe. Around 25% are house or bedbound, unable to properly care for themselves, sometimes for many years or decades at a time. The majority of severely affected patients are unable to access any services and are not offered home visits or specialist inpatient care [1]. People with ME have a measurably lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Rheumatoid arthritis [2a,2b]. ME is not taught in most medical schools despite it affecting 15-30 million worldwide [1] [3] [4].
The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic [5,5a]. Many doctors still don't know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism [6].
Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology - The NICE guidelines “do not fit” with the patient experience and “perpetuated my misunderstanding” of ME by recommending Cognitive Behavioural Therapy and Graded Exercise [7]. NICE is currently updating its guidance, which is expected in October 2020 [8]. The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017 [9].
Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [10]. “In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis” [11]. Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management” [12].
NOTE
Read about my story and a disclaimer in the about section of this channel.
REFERENCES
[1] researchbriefin...
[2a] www.ncbi.nlm.n...
[2b] bmcpublichealt...
[3] www.hrpub.org/d...
[4] www.meaction.n...
[5]
drive.google.c...
[5a]
podcasts.apple... (4 mins 50)
[6] www.meaction.ne...
[7] www.rcplondon....
[8] www.nice.org.u...
[9] www.meassociat...
[10] journals.sagep...
[11] www.mdpi.com/2...
[12] www.meassociat...
TWITTER: / abrokenbattery
CREDITS
Linda Tannenbaum - Open Medicine Foundation (OMF)
• What is ME/CFS? (Myalg...
Dr Anthony Komaroff MD
• Beyond the Data - Chro...
Professor Dane Cook speaking at Solve CFS
• Post-Exertion Malaise:...
Professor Maureen Hanson speaking at RME Sverige
• RME Konferens Malmö 17...
Dr Lucinda Bateman speaking at RME Sverige
• Summary of the IOM Rep...
Dr Lily Chu speaking at Solve CFS
• Post-Exertional Malais...
Stacey Poole
• ME/CFS: The Death of S...
Dr Ron Davis speaking at Emerge Australia
• Dr. Ron Davis of Stanf...
Dr Anthony Komaroff
www.capeandisl...
Dr Nina Muirhead - The ME Show
player.fm/seri...
Dr John Chia - ME/CFS Alert
• MECFS Alert Episode 38...
Annette - BBC Breakfast
• NICE guidelines item
Emma - You and Yours - BBC Radio 4
www.bbc.co.uk/...
Dr Nigel Speight
• 31. ME/cfs and the cou...
Dr Charles Shepherd
• 39. ME, exercise and t...
Patient crash
• Energy Crash Diary - W...
Patient Relapse
• Video
Blogs
Anil Van der Zee
anilvanderzee.com/
Hannah Radenkova
superpooped.blo...
Amy Harbottle
www.treatably....
Laura Elliot
/ lcelliott2
Daniel Moore
thelowsideblog...
Laura Chamberlain
laurachamberla...
Jessica Taylor-Bearman
www.jaytay.co.uk/
Martin - Paused ME Vlog
/ b3fq8jvchv9
#MyalgicEncephalomyelitis #ME #ChronicFatigueSyndrome #CFS #MECFS

Опубликовано:

30 сен 2024

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Комментарии : 107

@rachelpatchett6629 3 года назад

I always feel teary when I see/watch something affirming my condition. I still can’t believe it is so widely misunderstood.

@JoyfullyGrumpy Год назад

I hear you Rachel! Sometimrs I too need validation that I'm really sick, need the help I need.

@kimbo1414 11 месяцев назад

Me too

@katrinmurnain9197 3 года назад

21 years now with M.E ...Bed bound and no support ...thank you for this Acknowledging my illness , from Australia

@loriengland1422 2 года назад

This is one of the best videos I’ve ever seen about ME. What other disease do you know of where the patient has to become a research scientist, a human guinea pig and their own doctor due to not only widespread ignorance about their disease within the medical profession but unfounded biases against the innocent people unfortunate enough to develop it?!!! Beyond disgraceful.😢

@DeborahsLonging 2 года назад

Very well said.

@blubberpaste 4 года назад

This is such a good video! thanks for that. It really shows how ME affects people. I am in a mild to moderate state of ME but still not able to work anymore. This disease is horribly disabeling even in mild forms! So thank you for this video and the education!

@sallysampson628 4 года назад

This acknowledges my illness, it’s so sad after 30 years. But I’ve shared it with friends and family in the hope they’ll watch it and understand me and ME! Thanks for doing this 👍

@clarasanogueira4937 4 года назад

Thank you for acknowledging this illness. I’m suffering for over 40 years and not a doctor believes me. I had to do the research myself and when I inform doctors, the reaction I get is that I could be bipolar or should get myself together. I can’t talk to anyone about it, because people are not interested and the worse is that I feel that if my husband dies before me, I’ll commit suicide because I can’t look after myself at times and have nobody else. I do have occasional good days, when I want to do everything I’ve missed in bad days. At the moment I’m in bed because I have no energy to do basic things, such as my own higiene. Having a bath is too much to bear. Life sucks

@clarasanogueira4937 4 года назад

I can’t work because of the bad days, but I have no government help. HELP!!!

@stefanmitrovic973 4 года назад

Lovely video content! Sorry for the intrusion, I would love your thoughts. Have you heard about - Dinanlinson Rebooting Health Approach (do a google search)? It is a good one of a kind product for getting rid of chronic fatigue syndrome without the headache. Ive heard some great things about it and my cooworker got astronomical success with it.

@GingerPeacenik 2 года назад

I’ve had it since 1978 (got it as a kid ). I’ve spent nearly my entire life being thought of as lazy, a screw up, crazy, a lousy friend, not at all a “fun person”, etc. my mom was the worst about it. She has always believed that it’s all in my head, and keeps saying that I simply need to exercise more and drink more water. I broke off contact with her years ago.

@CEBGRACE Год назад

@@GingerPeacenik Look up mayo clinics findings on this our constant enemie! I know exactly how U feel people cant understand this! And U know neither do I. Its Horrible!!! To many symptoms to describe so of course we are hypochondriac! And for water I drink and drink! It helps but No cure... tell people who dont believe U yes they R right in one way! That is the illness is in our head But it's a physical condition in them Brain!!! Not imaginary....God bless You my fellow Sufferer in this Hope they will find cure b4 others have to be beaten with all this horrible condition...that is as reL as ant physical Disease Hope from 27yr. Diagnosis... and still hoping

@sannajonkhart8758 4 года назад

I'm so grateful for the videos you make!!!! this one is great to send to doctors, caretakers, family, friends, neighbours.... And in my case especially to the local townhall, since they're refusing to give me (severe ME) and my son (Mild ME) the proper care and facilities. Raising awareness is really necessary, and I must say it is starting to work (even though we still have a long way to go): so many more people and sometimes even doctors start to open up to the realness of ME. Keep up the great work and God Bless.

@riohenry6382 4 года назад

Thank you for validating my illness. We need far greater funding to tackle this thing. God bless you and your son in your struggles

@zarahughes1285 4 года назад

Hear her Rio Henry xx

@natashaball8248 4 года назад

Thank you so much for creating and posting this video. It explains the illness and shows very well what it's like to live with it. We must continue to demystify the illness.

@chelsb5254 4 года назад

You are making fantastic videos, keep it up. Really appreciate the hard work put into this. 💙

@christinedidur364 4 года назад

this is a great intro, thank you.

@brokenbeautychinelonwaenyi6776 4 года назад

Thank you for sharing this video! This illness have destroyed my life. It has rendered me house/bedbound. It explains the cfs part of my name. I’m so ill that I have no hope of ever recovering again because I’m having more symptoms and more diagnosis as time goes on. Let’s keep sharing this this video for the world to understand us better 😭

@BrewbokOwl 4 года назад

There is hope, lots of people have recovered from this horrible illness, I’m working on it and there’ll be a way for you as well. Listen to recovery stories, they give you hope back!

@brokenbeautychinelonwaenyi6776 4 года назад

Rosie Michell I wish I can believe this. I’m ill for over 23 years since I was a teenager and have got to the point where my husband and all my kids are carers. Maybe there’s hope for those that have mild MECFS but not people with advanced ones like me. Many people buy supplements and stuff and it work for them but nothing works for me. I’m continuously on the decline. I have just shared this video to a couple of people on my WhatsApp contact to help them understand me more. I also have Facebook and Instagram accounts just for awareness to this horrid illness. Millions of us are wasting without hope of recovery and in pains still the world goes on as is nothing is happening. Even the abuse we go through in the hands of people who look at us if we are pretending to be ill is even more heartbreaking than the illness itself. I cannot even afford a heavy duty mobility scooter to go out once in a while for fresh so I stay indoors. The damage and pains are countless! Anyways, thank you so much for your kind words. I appreciate.

@amym5062 3 года назад

Brokenbeauty Chinelo Nwaenyi I absolutely believe you. I’ve been sick for over a decade, and it’s so incredibly debilitating. I know that medical institutions like Stanford and Harvard are starting to look into medication’s to help the ME population, but it may be decades before something works. And I doubt there will ever be a cure... although I’d love to be proven wrong! My heart goes out to you, from another ME patient ❤️

@Spikypotato. Год назад

@@brokenbeautychinelonwaenyi6776 my heart goes out to you. You are not alone, and we who live with this horrid illness understand❤️‍🩹❤️‍🩹❤️‍🩹🙏🏼🙏🏼

@allahuakbar3810 Год назад

Hi how are you now You can walk in street ?

@ChrisGroggyCreaser 2 года назад

I've Had it SINCE 1987 Here in West Hull,UK!!... :( My 'sleep' is UNREFRESHING,I FELL KNACKERED & I KEEP FORGETTING EVERYTHING Incl the correct words to speak!!... :(

@samhartford8677 2 года назад

Well, with Long COVID, hopefully there'll be more research into this, not that there is a great promise of speedy cure.

@JohnBonOneBonneville 4 года назад

💙 Thank you 💙

@zarahughes1285 4 года назад

Thanks for sharing this video. Its the first video which totally explains my illness & hopefully teaches non sufferers what it i really like for us sufferers. xx

@c.b1566 4 года назад

Such a good video, thank you. What do we have to do to get recognition, funding and basic help?

@Queenofgreen515 Год назад

I have this disease. It’s vile. I’m down to about 10% of my previous functionality on good days. I used to walk, run, swim and go to the gym. Now I’m housebound more or less.

@iamnoob7593 11 месяцев назад

I have got CFS too , But there is hope , Fix the nutrition .

@RedGaming23 4 года назад

Thank you so much for sharing this video. I’ve been looking for new material to share with the world when I get asked 10x a week what is Cfs and this video conveys so much of the key info I would want them to understand.

@leelaplay8480 4 года назад

This is a fantastic video! Well done and thank you. My only suggestion would be to make a stronger title so that people looking for info know that this is from experts, not just jo blow's personal opinion. Something like 'World experts describe ME (myalgic encephalomyelitis)' or 'What is ME? The experts weigh in on myalgic encephalomyelitis'

@julieenglefield3149 4 года назад

Thank you so much for this video which really explains ME/CFS.

@loriengland1422 3 года назад

This is the best video I’ve ever seen about ME CFS. I’ve shared it with many doctors, family members and close friends. I’ve even sent it to one of my senators (Senator Keane) here in VA and posted it on my FB page. Even though Dysautonomia International has been very dismissive of ME CFS, (It seems nearly every time I mention ME CFS on their FB group, I’m censored!) some of their more recent videos look eerily similar to this video. Coincidence? Perhaps.... I’d like to think they’re finally coming around. As it is, they’ll be working closely with Dr. Klimas on researching Covid-19 “Long Haulers.” I’ve been hoping and praying for such a collaboration since I was diagnosed with post viral ME and post viral POTS over four years ago.

@bigjoegamer Год назад

As of the time I'm writing this message, this is the most useful and correct video about MECFS I've ever seen, as a person suffering from MECFS symptoms for over 12 years. I show it to everyone who asks me about my health or my life. I wish doing that wasn't necessary. Thank you to the everyone involved in creating and sharing videos like this, and to everyone working to cure MECFS and similar diseases.

@BrokenBattery Год назад

Thanks. I'm glad you find the video useful.

@beverlyreeves9773 4 года назад

one of the best ME/CFS videos to date.....2/8/2020

@bigjoegamer Год назад

True. It's 2023 now, and this is still one of the most helpful MECFS videos to ever exist, I think.

@suemarie6032 4 года назад

Thanks for another great informative video. I just wish non-believers would keep an open mind.

@sweetiepienumber1 4 года назад

Excellent video. Thank you.

@fluffyspit 4 года назад

Thank you

@kieranwarden1412 4 года назад

Thank you so much for making such an excellent and succinct video. I add a link to this on any posts on social media where I talk about ME/CFS.

@BrokenBattery 4 года назад

Thank you and thanks for sharing

@jayextarys8616 4 года назад

Thank you

@loriengland1422 4 года назад

This is one of the best videos I’ve ever seen on ME CFS. I’m planning to ask my new Pulmonologist to watch it and the most recent video with Dr. David Systrom, Pulmonologist at Brigham and Women’s Hospital, who performs the two day invasive cardiopulmonary exercise tests on people with ME CFS and other people suffering with exercise intolerance.

@BrokenBattery 4 года назад

Thank you and good luck with your new Pulmonologist.

@mumsow Год назад

I was offered a course of CBT which I felt obligated to try and I completely crashed from it.

@kathygreen6043 Год назад

Yes. It is one of the worst diseases. The fatigue is so overwhelming. Every morning between 3-5 am my brain bursts with an adrenaline attack, One year of this. My third bout in thirty years. Both times, recovered after two years. This bout is by far the worst.

@joshs2444 3 года назад

Great video! Thanks for creating this. I developed this horrid illness after neck manipulations which caused a subluxation & instability along with contracting Lyme + coinfections. It seemed to be the perfect storm for overwhelming my immune and nervous system. I now have dysautonomia, extreme fatigue, PEM, the whole nine yards and more.

@m.e.cornelis9722 3 года назад

Good docu !

@milld9345 4 года назад

I don't know anyone that recovers just they might improve if they take adequate steps, like pacing.

@MyPigletFarts 3 года назад

I need help, where can i go? I dnt have insurrance because i cant work since 2018.

@jenniferrogers8966 3 года назад

This is true, please please God help

@geralddober3798 4 года назад

Great help - thank you!

@docjnsn73a 3 года назад

A good video. I was given an ME diagnosis by one of the few specialists working with this condition. Probably the best and most compassionate doctor I've seen out of dozens. As it turns out though my symptoms are actually from Fluoroquinolone Toxicity. I suggest that anyone living with ME, Fibromyalgia, etc. Really take some time to look into this as a possibility. I've read so many accounts of people saying that their ME started after an illness that was so bad they were on antibiotics for several months, or several courses of them. They then blame the virus and not the medication. Hopefully this helps at least one person as I've done way better since learning what caused my problems and modifying my life accordingly

@KatharineBernadette 4 года назад

Mold and Chemical exposure in my home caused this for me. Getting out and into good air was the cure, but I know others have lasting damage. I have cancer now, and without a doubt, cfs was WORSE!

@laetitiakerlo5864 3 года назад

Merci ! Merci de France ! Tous les médecins français devraient regarder ce documentaire.

@alpharaccoon1638 4 года назад

Im gonna get over this fucking hell of a fuck... I’ve been better but I often feel tired af. I workout with my school 4 times a week. I really want to get back on my basketball team again.

@ismailhendricks40 Год назад

U feel useles .and the human body is not created to sleep whole day .so why wuold they lable them as lazy but they realy are like a flat battery have some respect

@renecurry9978 2 года назад

Thank you for this video. It’s such a difficult condition to explain . It is so helpful to have a professional presentation that others can understand.

@herfoggymind1894 4 года назад

Thank you for this

@BrokenBattery 4 года назад

🙂👍

@konjoolee2994 4 года назад

ME must have superpowers to see the cause and treatment of the disease. Professionals should be able to understand the causes and differences between CFS and ME and be able to treat them. CFS is a condition where all 5 major control systems that control our bodies are not working. So, there may be various mental illnesses, disease symptoms in the digestive system, respiratory system, circulatory system, and muscular system. ME may have one more cause than CFS. For CFS treatment, remove the cause and reboot the body control system. ME treatment will reduce uric acid level while drinking plenty of clear water at the same time as CFS treatment.

@PaulW7000 4 года назад

Wow, excellent video. I've been misdiagnosed with two other diseases over the last few years, but there were too many symptoms that just didn't fit. Videos like this are excellent for me to discover what's what, as I'm having trouble concentrating to read. I need my family to watch...

@BrokenBattery 4 года назад

Thanks Paul I'm glad you found it useful.

@leishaschoer4958 4 года назад

Your channel name is the perfect description of this ailment

@drew4me 3 года назад

This is a brilliant, disturbing, ad accurate video. My family so don't get my DIS-ease, despite them having different troubles themselves. Arghhh

@BrokenBattery 3 года назад

Thank you 🙏 and sorry to hear about your family.

@mashr52010 2 месяца назад

I didn’t even know what was going on, but when I noticed, I didn’t believe it. By the time I went to the doctors I was moderate. I didn’t know I couldn’t do graded exercise. I’m now in the severe stage and basically housebound laying in my bed, unable to prepare food for myself unable to do a lot for myself. I’m sleeping constantly. Waking up, dehydrated, hungry, and a headache, but unable to do anything about it. I wish I had more doctors that listened. I wish I listened to my body. Anytime I leave the house for an appointment. I flare up and I feel miserable and I crash afterwards. I feel trapped in a broken body.

@kingyo9783 Год назад

So...what to do with it? How to stop this illness?

@BrokenBattery Год назад

Pacing as a management can help reduce the amount of crashes from PEM. You can also get some medications to treat symptoms. Read the ME Association purple book or the ME/CFS coalition. You can also get treatments for comorbidities like POTs and MCAS if you have them.

@chihuahuapixieprincess2482 Год назад

27 years going from a very fit active happy person, forcing exercise and constantly crashing I now have a miniscule life with PACING and it does stop long crashes. I still live in hope they'll find a cure and now with Long Covid obviously they have to - isn't that tragic!

@johnmaggiorino4493 7 месяцев назад

How is this diagnosed???

@BrokenBattery 7 месяцев назад

It's usually diagnosed based on a clinical history. There are also number of different diagnostic criteria the most recent and probably the most accurate are in the NICE guideline. Here is a summary which has a section on diagnosis. meassociation.org.uk/wp-content/uploads/NICE-Clinical-Guideline-on-MECFS-An-MEA-Summary-December-2021.pdf

@Littlecrumpet 10 месяцев назад

i think ive got this, been begging the drs for help and they just keep giving me blood tests after blood tests all that keeps coming back normal and they dont even offer a follow up appointment to see what other options they have but i guess thats the NHS for you

@BrokenBattery 10 месяцев назад

Sorry to hear that. The NICE guidelines has details about diagnosis, this summary from the ME Association is good. One of the key symptoms is Post Exertional Malaise or Post Exertional Symptom Exacerbation which is the most characteristic. It might be worth speaking to a charity or other patients aswell to find out if there is a specialist in your area. meassociation.org.uk/wp-content/uploads/NICE-Clinical-Guideline-on-MECFS-An-MEA-Summary-December-2021.pdf

@Littlecrumpet 10 месяцев назад

@@BrokenBattery its just scary because i live alone, im also very much on my own too so nobody to take care of me, and i dont want it to get soo bad that im as bad as most patients shown in these videos ive seen its horrifying, but im slowly getting worse to the point its getting dangerous, like forgetting to turn of the oven or grill after cooking and not noticing it until days after, forgetting to lock my door when i leave the house ect its soo scary and dangerous for me now, i mite need some sort of carer to come and just check up on me or my house a couple of times a day if i can find something from some source that will do that, im terrified of where this illness is going to land me.

@BrokenBattery 10 месяцев назад

@@Littlecrumpet It must be really hard. A carer would definitely be good to help with physical activities as well. It would be worth speaking to one of the charities, they may be able to offer some advice.

@alpharaccoon1638 4 года назад

I was dignosed with mono in late 2017 and i’ve been fucked by ME since

@louisefaist6054 4 года назад

Hi, thank you so much for this amazing video. Could you please allow the community to add subtitles ? I would like to add French ones so I can spread the word to my family and friends!

@BrokenBattery 4 года назад

Hi Thanks. That would be great. I'm just working on the English subtitles. Once these are done they can be used as a starting point for other subs. I can give you a shout when they are ready. What's the best way to contact you? Or send me a message on twitter @abrokenbattery

@trevorstewartblaikie Год назад

How to take care of the soil before you strip it of all it’s oil.

@MariaRodriguez-sc4yw 2 года назад

It's very useful for ME visibility! How can I add spanish subtitles? Or do you have the video in spanish already? Thank you!!

@BrokenBattery 2 года назад

Hi can you send me a message on Twitter or Facebook? facebook.com/brokenbattery twitter.com/ABrokenBattery

@suzannegrabber4849 4 года назад

Ty.

@youknowcrimedontpay9257 2 месяца назад

This is a real debilitating medical condition and I have suffered with it since 1982. No one can help us, no one is looking for new medicine to help up. No one is looking for a possible cure. No one cares about us except other patients who suffer with us. I've made it from 20 yrs old to 62. I've had enough of this suffering, I just don't know how I'm going to tell my son that his dad wants to let go and end my pain. I'm devastated I never thought I would want to take my own life because this life is not life at all. I wish I had one wish and I would wish that all patients with this will be cured and the time they lost is reversed and given back to them.

@Flutterio 2 месяца назад

Don't give up, people do care 💕

@Flutterio 2 месяца назад

Don't give up, people care and understand that it's not easy to live with but they love you 💕

@youknowcrimedontpay9257 2 месяца назад

@@Flutterio Thank you for the kind comment. 💙

@debranice3227 2 года назад

Let hope & pray🙏 the medical beds can fix us all 🤔 I have read good things about them. GOD bless all 🙏 Thank you for your video. 🤝

@orego800 4 года назад

Why I can't see answers to some "primary" medical questions about the patients? What is the reaction to 1) detoxing measurement; 2) anti-depressive therapy; 3) anti-anxiety therapy; 4) anti-psychotic therapy; 5) stimulation drugs (amphetamines, at first)

@siennathompson6136 4 года назад

Stimulants are not helpful because it creates a false sense of energy leading patients to overexert and crash. It taxes a broken energy system. It's not a psychiatric illness, so psych meds would not help the actual ME/CFS. The most helpful meds are to treat orthostatic intolerance which is extremely common - low dose beta blockers, midodrine, fludrocortisone, desmopressin etc. Saline therapy is also helpful to treat the low blood volume. LDN is successful for a subset.

@BrokenBattery 4 года назад

The $1M IOM report, 15 experts spent a year reviewing over 10,000 peer reviewed publications and concluded ME "is a medical-not a psychiatric or psychological - illness". None of those treatments are appropriate. me-pedia.org/wiki/Institute_of_Medicine_report#Key_findings

@jananoskova5049 4 года назад

Some people with ME are taking antidepressants or other psycho-pharmaceuticals for they have depression too (like patients with other chronic illnesses). And it might be helpful for their state of mind, but is not helping to get better from ME.

@tallwomenresistence1473 Год назад

If only we knew what really happens to us and why! It's so frustrating! Apart of the suffering of the illness itself and the dispise of some doctors and society in general.😢