Severe ME/CFS - What is that? 

Thank you! Unfortunately, I do.

Now that people are getting this after COVID there are researchers waking up. I have lost my life to this since the 80s. Begged God to either take me out or help me. Subsequently discovered hyperbaric oxygen therapy…am using it very gradually and slowly to avoid crashing. My crashing has become so severe my body has a hairline trigger for it…but persevering slowly building up my body to handle oxidative stress…tiny tiny steps…along with PT help from therapists who “get” PET. I feel I have hope but it may take 3 years to see improvement. It is my last hope I feel, but at least it is hope. HBOT can help other neurological issue so I believe it will help with ME/CFS. I am alone in my life with this illness. Others do not want to be bothered understanding and still choose to think this is imagined. If they only knew. It is hell…suffering and more suffering for extreme cases…gets worse with age.

Where is your pain yes the pain terrible they say it's fybromyalgia with more pain where do you get it

@FeverYonge I don't think you have read any of the articles I named earlier. MCAS is much more than EDS. Remember that ME/CFS is a diagnosis based only on symptoms where the cause of symptoms is unknown. This means that ME/CFS can be caused by several diseases. Many people with ME/CFS have Dysautonomia which can have many causes from drinking too little Water, physical inactivity, MCAS, Auto immune diseases and many others causes. In some of these people the original cause of Dysautonomia will go away on its own, but they have continued Dysautonomia due to physical inactivity. These people can be cured by pacing and increased physical activity which will make other ME/CFS sufferers worse. That was probably why the Rituximab study initially seemed so promising until it turned out that there were just as many people who recovered on placebo as Rituximab. When you see a dog how do you know it's a dog? It looks like a dog, it acts like a dog and it barks like a dog. Why assume that mast cell activation (MCA) from mast cell diseases is behind many with ME/CFS. MCA can cause all the symptoms that we see in those who have ME/CFS. MCA can provide all the triggers that we see in those who have ME/CFS. MCA can cause all the forms of hypersensitivity we see in those with ME/CFS. All other disorders that are overrepresented in those with ME/CFS are linked to MCA. Can you name any other diseases that have the same symptoms, triggers and hypersensitivity as ME/CFS along with association with all coexisting diagnosis? There are three known mast cell diseases which can lead to an ME/CFS diagnosis. Systemic Mastocytosis is very rare, Mast cell activation syndrome (MCAS) is very common and the new Hereditary Alpha Tryptasemia Syndrome is very common. A few years ago I ran into a very frustrated man who had had an ME/CFS diagnosis for more than 10 years. He had now been told that his ME/CFS symptoms had been Systemic Mastocytosis all along. I hope he had a mild variant as 20 to 30% of those who get the disease get a advanced variant which is fatal. Look for the following articles. Signs & Symptoms - Mastocytosis Society Canada Hoffman Centre Treating Mast Cell Activation Syndrome (MCAS) BBC Long Covid triggered our MCAS, but doctors didn't believe us NIH Genetic explanation uncovered with links to ME/CFS From NCBI, Mast cell activation symptoms are prevalent in Long-COVID From NCBI, Immunological dysfunction and mast cell activation syndrome in long COVID From NCBI, Mast cell activation syndrome and the link with long COVID From NCBI, Pathophysiology of Post-COVID syndromes: a new perspective From NCBI, Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome From NCBI, Successful Treatment of a Patient With Severe COVID-19 Using an Integrated Approach Addressing Mast Cells and Their Mediators From ScienceDirect, Mast cell activation disease and the modern epidemic of chronic inflammatory disease There are many variants of EDS, all of which except of hEDS have known genetic causes. hEDS is very common in those with ME/CFS and there is much that indicates that inflammation from mast cells damage connective tissue that leads to hEDS. hEDS is one of many ME/CFS coexisting diagnosis linked to mast cell activation from dysfunctional mast cells. From NCBI, Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature From article. Evidence is still needed to determine the pathophysiology of hEDS; however, the association among these conditions and their prevalence in hEDS/HSD may be explained through consideration of persistent chronic inflammation contributing to a disruption of the connective tissue. Aberrant mast cell activation has been shown to play a role in disruption of connective tissue integrity through activity of its mediators including histamine and tryptase which affects multiple organ systems resulting in mast cell activation disorders (MCAD) Cranial Cervical Instability, also known as CCI which you mentioned as a cause of ME/CFS, is a medical condition that occurs when the ligaments and connective tissues that support the head and neck become weakened or damaged. This can lead to excessive movement between the skull and the upper cervical spine, causing a variety of symptoms such as chronic headaches, neck pain, vertigo, and even cognitive impairment. CCI is often seen in individuals with conditions such as Ehlers-Danlos Syndrome but can also be caused by trauma or degenerative changes in the spine. As Mast Cell Activation Disorder can damage connective tissues and cause hEDS, we can assume that Mast Cell Activation Disorder can also cause Cranial Cervical Instability (CCI) by damage connective tissues that support the head and neck. I don't see how CCI can cause all the symptoms, triggers and hypersensitivity that we often see in those with ME/CFS. CCI is linked to hEDS and Migraine but not all the other ME/CFS coexisting diagnosis that are common in those with ME/CFS. Can you find a connection between CCI and bladder pain syndrome/interstitial cystitis, Endometriosis or Chemical Intolerance? From NCBI, Mast cell activation syndrome in pain syndromes bladder pain syndrome/interstitial cystitis and vulvodynia From NCBI, NLRP3 Inflammasome Activation of Mast Cells by Estrogen via the Nuclear-Initiated Signaling Pathway Contributes to the Development of Endometriosis From NCBI, Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity

Thank you!

Its pretty common. Not a rare disease.

@@freakattack9616 I meant to say, this video gave me more insight into what they go through. Not to say it's rare

@@myrawest got ya. Its probably the toughest illness out there with ALS and shit

If this continues, we will all know someone who has this disease

but when the crashes are painful.

@@barbaraferron7994 Ask a Pro NFL player if 3 per day practices are painful.. Ask a body builder if getting down to 5% body fat is painful.. Go ask a UFC fighter if making the weight cut is painful. Life is painful, you can't let it be an excuse to give up and do nothing- forever.

@@barbaraferron7994 Also, you have to change things up-- Try fasting for several days. You would be shocked at how much food is effecting you. I did a 6 day water fast and I felt fantastic. Lost 22 lbs too, in a week. I didn't realize how bad the food I was eating' was bringing me down and making feel like trash. Fasting can be such an eye opener.. then you can start eliminating foods and seeing what the problem actually is. For most people, we just eat way too much sugar in different ways and don't even realize it. I'm not saying that's the issue here---- but you have to try new things or you're never going to do anything but lay there.

Pain is a lot harder to take when you are on a crash You don't have any reserves to tuff it out with

@@calholli My sister found she had more energy when she fasted but she got hooked on fasting and died from it. So I am cautious about fasting and I avoid junk food. I can only lay down for a while and then I get up and do something there is plenty that just has to get done.

ME is always viral related.

@@freakattack9616 not ALWAYS.. it can be from severe trauma, including a big surgery

@@e.williams13 yeah, because that triggers viral reactivations

@@freakattack9616oh ok ...I gotcha

Those of us who have suffered with chronic fatigue for years have tried pretty much everything, sad part is that some things help while other things make it worse.

Exactly...but psychatric diagnosis make more money.

But don't forget 60 percent have Asperger's ADHD undiagnosed the link

Thx! In a Crash atm! How are you?

@@paused_me idk im experiencing dpdr non stop anxiety and fatigue. I dont really move. My anxiety just went away now tho