Severe ME/CFS - What is that?

Severe ME/CFS is a stage of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

ME/CFS is divided into mild, moderate, severe and very severe. Severe and very severe form affects around 25% of ME/CFS patients.

You can find more information here:

You can visit me on Instagram, I would be happy:

[teshayazzie]

I was diagnosed 7 yrs ago. I had a flare up a few months back. I couldn’t get out of bed. I’m a single mom. No family. I eat myself alive when I get flares. “You’re a horrible mom. You’re lazy.” Blah blah. So I push myself and of course it makes it worse. To the point where I can’t even lift a finger. To the point where I can’t even be woken up. I’m thankful I have kids that are older and can take care of themselves and siblings. But it tears me up. I can’t do much of anything anymore. Even picking up the floor or starting a load of laundry drains me. Showering. Getting dinner. I just want to do normal everyday things without paying for it.

[LadyBNuka]

I too have this illness, for two decades now. The pain and suffering is horrific. I have been told that we feel the same way an aids patient (warrior) feels two months before death but we keep on living. I was 12 when I felt the first symptoms. It has devastated my life, my hopes & dreams. I hear of so many of us committing suicide and I cry, I wonder when is the pain too much to live for me? I committed a promise to myself that I will suffer as long as I live and I will face it, I have accepted my road but it is an extremely lonely, dark, daunting experience. Doctors ignore us, there are no funds for research even though there are so many of us. Mine is getting progressively worse in the last two years, (I am 35) I am afraid, I am tired but I am an ME/CFS Warrior for life. I feel too old for my years, my mind is good but my body is not. I am sending you so much love, hope, strength & know we are all out there hoping for a better day, a day when we know why this happened to us, a day when treatment comes…the day the cure is created. We are a great hope in a broken body. Bless you. -Brittany

[desireoverpain]

I'm so thankful for the times where we (people with mecfs) are feeling well enough to be able to communicate online. I can't imagine the level of hell we would be in without technology. Being alone together is much better than just being alone.

I'm quite impressed that you're able to get these videos out Martin. You must be sacrificing a lot of your spoons.

[missblack]

I feel like crying watching this…thank you so much 🥺 I’ve already sent it to around 10 people, this is what the internet has been missing!! We need more videos like this to spread awarness!! ❤️ Even the closest people still don’t understand this complex illness…I still got goosebumbs it’s THIS good 😲 You’re the best!!

[jaeljade]

I'm so sorry for your illness. I'm sorry for mine too. We did not deserve this. Your voice is so important and thank you for being strong enough to make this video.

[lindawescott]

Thank you. Have saved to show any new carers. My daughter and myself are both severe and long-term bedridden 24/7. I hope you have had some improvements from this state

[marionjeannesuterbrightestdark]

Thank you to make severe ME visible. It is such a shame. And yet, sometimes it feels like even ME Sufferer who are only mild don't want to see the impact. That's why I am no longer at forums. There usually you have to be motivated to help yourself....or even blame yourself. So many sufferer don't understand that ME is a disease like M.S or cancer. So they don't understand that we need science and medication. And alternative methods are mostly not sufficient. At least not when one has been ill for many years. I have been ill for 28 years now. I am moderate, mostly horizontal but can also be for 1-3 hours per day up in good phases. This is still not enough to share a social life. I am so sorry. 2:33

[heatherescontrias]

I have had ME for over 30 years. I am moderate. I can't work, but I am not bedridden unless I'm in a crash. I'm so sorry that your situation is so severe. Please, hold on. I'm sending love and light to you.

[redravenkitty]

Thank you for making this. I have severe mecfs also. Am effectively bedridden 2 years now. ❤

[simoneberg]

Danke für das Video und die Kraft die du dafür aufbringst

[DShepherd]

This is me now. Its so hard to explain. Ty for doing such a beautiful job for all of us ❤❤

[chitownkitty]

Thank you for posting this and giving your perspective. I've lived with this condition on and off since 2009. In 2022, it came back and has not left me for 1.5 years. Again, thank you for posting this video!

[SOTFarchive]

Thank you for being detailed about crashes/flares, and also by being so blunt about how it can be permanent. 💜

I often feel like I am the only one trying to warn people about the harsh realities of ME/CFS, and so it is such a relief to see you doing it too!
(and you have a much bigger reach than my channel does, so hopefully between us both we raise much more true me/CFS awareness)!

Keep it up! 👍🏿

[abstuli]

Most people with ME/CFS probably have Mast cell activation syndrome (MCAS) as an underlying disease for theirs ME/CFS symptoms
MCAS can have all the symptoms and triggers known from ME/CFS including PEM. MCAS is a very common recently discovered disease in the same family as the rare Systemic Mastocytosis.
People with MCAS have dysfunctional and overactive Mast Cells which are found in all tissues of the body including the brain.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
Many of these mediators are inflammatory, others control bodily functions.
There are many different medications that those with MCAS can try.

Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobil Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Chronic inflammatory response syndrome (CIRS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)

Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder

• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?

[erikjohnson]

If you read the Holmes 1998 Chronic Fatigue Syndrome definition, the criteria states that "chronic psychiatric disease is a condition which must be excluded" in order to obtain a CFS diagnosis.

[peterpanx]

Its very, very painful. The pain I experience is unimagineble. At least for me, before I got worst. How could I imagine that a pain like this even existed. It would be somewhat ok if I only experienced for a week, , but year after year. The pain has given me PTSD i believe with severe enxiety aswell.

[sharongaston]

Thank you so much for posting this. I have this tooo and iits hell at times. Thank you again, and i hope you are feeling better very soon. 🎉🎉

[LookUpp-]

Thank u for sharing this reality with everyone. Im with you…cfs for most of my life. Take good care

[relaxtakeyourtime]

Ich danke dir und wünsche dir alles Gute

[beaable]

I have ME/CFS. I get up and I make breakfast, then I have to lay down. If I go to grocery store or help my mom, I can't sleep and need two days to recover.