What is ME/CFS?

MEDICAL PROVIDER EDUCATION: **This video provides a basic introduction into the National Academy of Medicine's 2015 diagnostic criteria of ME/CFS.**

In 2015, a committee of the National Academy of Medicine (formerly the Institute of Medicine) reviewed the ME/CFS scientific literature and proposed clinical diagnostic criteria, with the specific goal of empowering more medical professionals to make a diagnosis of ME/CFS. This video provides a basic overview of these clinical diagnostic criteria, which highlight the most common core features of ME/CFS.

Although the content is geared towards healthcare professionals, and only opens the door to everything there is to learn about ME/CFS, this video serves as a simple educational tool to assist family members, employers, teachers, and members of the general public to gain insight and a better understanding of the disease as it impacts those with ME/CFS.

You can learn more about orthostatic intolerance and post-exertional malaise in our subsequent videos.

These videos were made possible with support from the Utah Medical Association, the R. Harold Burton Foundation, and other generous donors.

[katrinmurnain]

So very true i have had M.E/CFS for 25 years now, and experience all of these ... i have been bedbound for over 11 years now, thank you for posting this as we just do not get validation for the hell we are living through it feel's like we are just ghost's... from Kat in Australia ... p.s yes my pic is now 15 years old i keep it up there as a memory of who i once was .

[Allyf]

This made me feel like I was truly seen today!

[CricketGirrl]

Things like this are so much more helpful than the latest fad. "I cured my chronic fatigue syndrome through brain training!" I just watched a video about that baloney. Thank you for posting reality, Whitney.

[ldar]

Thank you for this clear definition of the ME/CFS basics. I’ve been sick with ME/CFS for over 38 yrs. I hope that other sufferers will get early intervention and appropriate treatment in order to potentially prevent their illness from becoming severe or lifelong. At the very least I hope with earlier intervention they’ll feel validated and cared for earlier, minimize the damage of this sickness on their system and avoid the neglect so many of us have had to endure.

[brendanrobinson]

PEM actually occurs in in Post Viral Syndrome, however thats a precursor illness to ME/CFS anyway.
MS and late stage cancer also have PEM, however its important to note that the unique thing to ME/CFS is that there is a *24 to 48 hour 'DELAY' before worsening of symptoms starts. In my mind that 'delay' is most likely due to the immune system gearing up (preparing) an attack. Just like it does for an infection. Interestingly PEM subjectively feels exactly like an infection.
MS and late stage cancer the PEM appears to be quite soon after exertion. i.e. No Delay. Also to Remember with ME/CFS that during the 'delay' the person can feel quite normal, with their average daily symptoms. after the delay those symptoms worsen dramatically, hence the alternitive term 'Post Exertional Worsening' which is easier to understand. PEM and ME/CFS remember the 'delay'.

Also if a ME/CFS person exerts during the delay period then they end up far worse off than had they rested. Sometimes resting can drastically reduce the PEM relapse.

*Note in rare cases the delay can be as early as 12 hours or as late as 72 hours. Normally 24- 48 hour delay. The length of time of worsening after the delay can be 2 days to months. Sometimes some people report never returning back to base line (as happened to me) Hence Graded Exercise Therapy (GET) is a farce (malpractice) and should be avoided. 'Pace' instead with many rests a day and change your activities. This reduces PEM dramatically. Also know your baseline can move (fluctuate) so be careful. 'GET' failed to recognise a fluctuating baseline.

[neferbey]

Thank you so much. I just learned about this a couple of days ago. I watched another video and found that I have been experiencing 17 of the 20 symptoms mentioned. Although I did not know what was causing my lack of energy, when I did have enough energy to clean my room or cook a meal, for example, I would do a little, and then take a break. Yesterday I walked with my daughter to pick up my granddaughter from school. The walk is about 12 minutes each way. Sometimes I'm fine, but yesterday I had to stop and sit on a park bench after the first minute, as my back was hurting. If it's not my back, it's the sides of my waist, and always shortness of breath even though we're not walking quickly. Anyway, after resting on the bench for a couple of minutes, I was able to continue for another few minutes. Today, I am devoid of energy, and have spent most of the day in bed.

[evonne]

I had to beg for my doctor to listen just to get a nutritionist, let alone a diagnosis. I was told 'maybe I am just getting old'. I was like I am only 42 years old! Missing work constantly having to makeup time, and only have about 6 good hours in a day for literally anything! Then I get migraines next day to 2 days if I have a really full day, and brain fog all the time following a big push to get something done. Its awful, stealing my life away. I am only learning how to recover, but learned its lack of energy on a cellular level and possibly has to do with gut health too. But how do we get good gut health back its talked about everywhere but what/ how??

[suemarie]

The best video I've seen so far to educate people with simple, easy to follow information. I even learned something new--I didn't know about the Nasa test. Like a few comments below, I do think some other relevant info is missing (eg. viral onset, trauma, ...).

[LukeFisherGAS]

Finally after searching for answers over the last 40 years, here is something that describes my issues to a T.

[sweetiepienumber]

Excellent! Now, how to I get my NP or MD to watch it? Thank you very much.

[ShadowMan]

*I've had this since 1993 and I have lost almost everything, my job, my sporting career and my dignity. I am just so stuffed all of the time, waking up feeling shockingly tired. It started after about 8 bouts of bronchitis and then a terrible flu and then all hell broke loose (M.E sufferers will know all of the weird symptoms I mean). After two years these calmed down and now I'm left worn out for about 18 hours of the day and suffer sore muscles and exhaustion after exercise. *Life often feels not worth living*

[Jade-bfwe]

Was diagnosed with ME/CFS back in 2017, didn't get an official diagnosis until 2019. Been struggling ever since. It's taken me months to find my baseline. With plenty of setbacks in-between.
Pacing is not easy if you don't properly understand it.
I think ME/CFS needs to be treated holistically, rather than the chasing of symptons. Particularly as new evidence suggests that there is strong links with experiencing trauma, even if this is big or small trauma.
Gut health and leaky gut issues, tackling diet and consuming fermented foods may help some people.
I appreciate there is no one size model that fits all with this illness. But you do have to have consistency over intensity to be able to progress.
I wouldn't wish this illness on my worst enemy.

[FannysLoA]

Thank you this was a clear and easy to follow video.
Can you make one on why we can't "just go to the gym and get better afer some months if you just push it" as well? It seems people have severe issues understanding that.

[curtiste]

Best primer on CFS I've ever seen!
Thank you!

[MyJeffreyJones]

Great video! One question: what studies suggest increased Alpha brain waves and deceased Delta brain waves in PWC's? My understanding from QEEG testing is the opposite: the brain is actually operating on slower Delta (sleep) waves in the awake state, not higher Alpha waves. Which is true?

[brobinson]

Problem is Orthostatic intolerance can also occur without a high rise in heart rate. I used to have POTS with ME/CFS but over the years the heart rate returned to a better level, however OI is still the same, and unbearable over time, I've since read OI is also caused by low blood flow to the brain, so having a heart thats not properly compensating or capillaries in the brain not dilating could be also a factor. Sildenafil (aka Viagra), proprananol and hydration with plenty of water, and medical grade 3 or grade 4 compression garments have helped me get a bit more time standing. That method wont work without compression stockings because you need to squeeze/push the blood up to the brain

[FedFanFL]

Encouraging - but who do we see? What can we do?

[FedFanFL]

Also - I see no mention of history of mono or physical or emotional trauma - is that a commonality? My EBV levels are off the charts.

[SweetT]

This sounds so similar to my very first MS symptoms, but SO MUCH WORSE!! I can't understand why so many have this illness that they're not doing more research on it. It's definitely not right at all.

[MECFSDiagnosticBiomarkers]

I think the viral onset part should be emphasized at the beginning of a video like this but otherwise, I think this was fairly well done. Though of course most patients would prefer the ME-ICC primer to be used as the definition.