Perhaps the most frustrating thing about having a chronic energy limiting disability is other people's ignorance about chronic energy limiting disabilities.

Every time your self preserving actions, inability to do something, requests for accommodations, skeptical attitudes, or apathy towards my situation occur it diminishes my ability to do things. I'd absolutely be able to do more if everyone else either had a little compassion or would just fuck off alltogether.

#MEcfs #ME #MyalgicEncephalomyelitis #ChronicDisability #ChronicIllness

Perhaps the most frustrating thing about having a chronic energy limiting disability is other people's ignorance about chronic energy limiting disabilities.

Every time your self preserving actions, inability to do something, requests for accommodations, skeptical attitudes, or apathy towards my situation occur it diminishes my ability to do things. I'd absolutely be able to do more if everyone else either had a little compassion or would just fuck off alltogether.

#MEcfs #ME #MyalgicEncephalomyelitis #ChronicDisability #ChronicIllness

Cried twice today so far.
Introductory online M.E. clinic meeting this morning with a view to getting more help plus assessment and diagnosis. It was quite emotionally heavy.
Plus the wire on my left hearing aid has decided to break, so I'm down to right side only, and it really highlights just how reliant I am on them both. Worried about the future & how I'll cope.
Could be worse but could be a lot fucking better as well.

#chronicillness #myalgicencephalomyelitis #deaf #hearingaids #Health

Two new boosting groups are now available to replace the now-defunct Guppe groups!

@mecfs - for ME/CFS, or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

@pots - for POTS, or Postural (Orthostatic) Tachycardia Syndrome

How it works:

If you tag one of these accounts in a post, the account will boost your post to its followers. Follow the account(s) to have boosted posts appear in your feed.

Please boost this to spread the word! 💚

@tomkindlon
#pwME#MECFS #myalgicencephalomyelitis #chronicfatiguesyndrome#POTS #PosturalOrthostaticTachycardiaSyndrome#PosturalTachycardiaSyndrome#pwLC #LongCovid

Two new boosting groups are now available to replace the now-defunct Guppe groups!

@mecfs - for ME/CFS, or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

@pots - for POTS, or Postural (Orthostatic) Tachycardia Syndrome

How it works:

If you tag one of these accounts in a post, the account will boost your post to its followers. Follow the account(s) to have boosted posts appear in your feed.

Please boost this to spread the word! 💚

@tomkindlon
#pwME#MECFS #myalgicencephalomyelitis #chronicfatiguesyndrome#POTS #PosturalOrthostaticTachycardiaSyndrome#PosturalTachycardiaSyndrome#pwLC #LongCovid

Hopeful question for the #MECFS community:

In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?

I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.

ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).

It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.

#pwME @mecfs#POTS #myalgicencephalomyelitis #chronicfatiguesyndrome

Hopeful question for the #MECFS community:

In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?

I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.

ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).

It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.

#pwME @mecfs#POTS #myalgicencephalomyelitis #chronicfatiguesyndrome