This is an incredibly isolating lonely illness.

Why is M.E. such an isolating lonely illness?

Physical:

• Most of us are incredibly deficient in energy (due to metabolic and immune dysfunction) so we must spend many many hours a day alone resting. All of us with M.E. feel exhausted and weak most the time (it's like having a battery that only ever charges to 20% and muscles that are made of silly putty). We are forced to give up hobbies, social events, much of life that would bring us in contact with people.
• At least 70% of us are unable to work full time so we are often isolated, spending our days alone at home.
• Most of us become fatigued or even crash from too much mental, physical, emotional, social stimulation/exertion so in order to reduce symptoms we must avoid triggers - this limits us to quiet lonely spaces.
• Many of us miss so many of life's milestones and those of our friends and families due to the illness. It can lead to feeling separated, different and/or abnormal.
• All of us try to avoid crashing most the time (although sometimes we purposefully over-do so we can experience little bits of life).  A crash is like the worst day of influenza with a hang-over.  It's horrible, like being poisoned in every cell of the body with immune system symptoms to boot (e.g. fever, sore throat, painful lymph nodes, shakes/tremors, dizziness). Avoiding crashing means avoiding triggers which is lonely making.
• The majority of M.E. folks (up to 80% or more) have OI which is orthostatic intolerance (in my case POTS).  It means when we stand up, especially if we stand still we feel horrible and dizzy/lightheaded thus we feel best laying down with feet elevated. This keeps many of us away from places where standing still is necessary (e.g. in line at a store). Instead you'll find us alone at home, or sitting in the car with feet up.

Other

• M.E. is isolating because Drs are either dismissive or have nothing to offer - despite having an awful life-stealing illness we're on our own medically. For example, there isn't a single full time specialist in the province where I live (only 2 in the country), there is almost no research happening in the whole country. 
• People with M.E. often feel cut off from family and friends because they see us on a good day and think we're better/improved or "it must not be that bad", suggest or assume we exaggerate (generally it's the opposite), and no matter how hard they try they will never really understand the daily drudge of living in a sick, drained body. I have friends that try to understand and it makes life far less lonely - it helps that they knew me pre-illness. Many folks aren't as lucky.
• M.E. is isolating because despite the millions of us with the illness, if we do 'come out' to someone they've never heard of it.  If we use the old "CFS" term they immediately think it's about being tired or fatigued (which is a common experience for everyone) and/or they immediately dismiss the diagnosis and ask if we've been checked for....X or tried Y.
• M.E. people feel alone because based on the amount of people sick world-wide, governments dedicate infinitesimal funding to the illness when compared to almost every single illness out there. Research shows that quality of life in M.E. is as bad or worse than end stage AIDS, M.S. or congestive heart failure yet for example in the U.S., the illness receives less funding than male pattern baldness or hay fever. Governments, Drs. researchers, all tell us through lack of consideration that "you don't matter".

M.E. is isolating because we are alone on so many levels.