balancedespitechaos

A ME 'Science' & Medical Survivor & Thriver ...
Living with #MyalgicEncephalomyelitis #ME #MillionsMissing #StopTheHarm #EndTheStigma

[balancedespitechaos @Balancedinchaos]

Worth repeating

[Steven Phillips, MD @StevePhillipsMD]

When someone has cancer, the community rallies. People run 10K's to raise money, bring food, & offer to babysit.

When someone has ME/CFS, Lyme+, or another marginalized chronic condition, they're told to think positively & get a hobby.

This. Has. To. Change.

[Scott Simpson -- Remedies Online Counseling 🏳️‍🌈 @RemediesPodcast]

With my friend Jeffery's blessing,

I'm posting his experience with

hydromorphone and his #MEcfs symptoms.

He has stage 4 metastatic cancer, but hydromorphone

gives him a lot of relief from ME symptoms.

Jeffery, ever the advocate:

"I share this in hope this could some day help others"

[PZ @pzneedsrest]

Carla was in agony just trying to eat, so she went to hospital for help. Instead docs cancelled critical referrals & ignored expert advice. She is now in more pain, having seizures & at times unconscious because they think #SevereME is psychological #SaveCarlasLife #ExposeMENow

[Valerie Eliot Smith @ValeriEliotSmit]

More validation for ME advocates who have long argued that the term "myalgic encephalomyelitis (ME) is entirely appropriate for this disease. "Chronic fatigue syndrome" (CFS), is not, and never was, remotely accurate but created as a way of "disappearing" an inconvenient illness.

[balancedespitechaos @Balancedinchaos]

@FaithOxenbridge @Sabrina_Poirier Much more open in my ribs ie I can stand & breathe at the same time without feeling like I'm having a heart attack. Tightness, restrictiveness gone.

Not a permanent fix tho but regular treatments keep it at bay

[balancedespitechaos @Balancedinchaos]

@FaithOxenbridge @Sabrina_Poirier I have home units (bought on Amazon) but also receive this treatment professionally. The professional treatment uses a unit with much higher intensity so I notice more improvement. The home ones carry me between professional treatments.

[Billy Hanlon @bhanlon15]

Deborah Birx, the White House Coronavirus Response Coordinator from 2020 to 2021:

“If we had taken Chronic Fatigue Syndrome seriously, if we had taken that spectrum of disease seriously - we might have treatment right now for Long COVID. I really hope that this is a wake-up call

[balancedespitechaos @Balancedinchaos]

@CaroleBruce17 I just went thru this very thing a couple of weeks ago. It is THE worst.
Things that helped me: Alternating between ice & heat, lots of rest, gentle stretching (knees to chest, one at a time, 2 or 3 reps., very gentle & slow before getting up/out of bed for anything) + time.

[Free Thinker @freethought202]

They banned him from the US for 2 years. Australia detained and deported him. They tried to humiliate him. They took away his ranking points and titles.
All because he stuck to his principles and didn’t give in. I hope his daughter understands one day what a true legend he is.

[Christoph Ströck @cstroeckw]

This is exactly what I and many other patients with #MECFS warned about. I still see no concerted effort by rehabilitation centers and big parts of the #Dysautonomia community/specialists to inform/warn about #PEM to mitigate risks! This is completely insane!

[balancedespitechaos @Balancedinchaos]

@agy_lena I do (& selected) 4k+ most days now but there have been many times in my #ME journey (since 2008) it was less than 100. At one point, I couldn't even walk to the bathroom without help.

[balancedespitechaos @Balancedinchaos]

Many of us with #chronicillness like #MyalgicEncephalomyelitis have been failed by Drs. and have only supplements to rely on.

#SaveOurSupplements

[Canadian Health Food Association (CHFA) @CAhealthfood]

Watch our President & CEO, @askelto on @YourMorning sharing how @GovCanHealth's recent regulatory changes will lead to increased costs and fewer NHPs on store shelves for Canadians. #SaveOurSupplements
➡️https://t.co/rrZL8mAvsQ
#cdnpoli

[balancedespitechaos @Balancedinchaos]

2) This is expensive already but the @GovCanHealth's plan ( https://t.co/NdXN5mKTdr ) will mean increased costs & less availability, resulting in further health problems for these Canadians.
@jyduclos Please stop this plan & #SaveOurSupplements
@PierrePoilievre @CAhealthfood

[balancedespitechaos @Balancedinchaos]

1) Our healthcare system does not provide care for many Canadians living with #chronicillness. They must pay for their own care, including supplements, out of their pocket.

[balancedespitechaos @Balancedinchaos]

Not all needed healthcare is covered by universal plans. As a #pwme (person with ME) #MyalgicEncephalomyelitis it's costly to pay for these services & supplements. Increasing costs &/or not being available leaves many to become even more sick. #saveoursupplements @CAhealthfood

[Canadian Health Food Association (CHFA) @CAhealthfood]

1 out of 5 brands say they are seriously considering leaving the Canadian market due to @GovCanHealth new rules. Stop Health Canada from taking away your natural health products. Tell your MP to #SaveOurSupplements at https://t.co/dn6p711LQH

[Canadian Health Food Association (CHFA) @CAhealthfood]

1 out of 5 brands say they are seriously considering leaving the Canadian market due to @GovCanHealth new rules. Stop Health Canada from taking away your natural health products. Tell your MP to #SaveOurSupplements at https://t.co/dn6p711LQH

[balancedespitechaos @Balancedinchaos]

#MEAwarenessDay #MyalgicEncephalomyelitis #ME

[balancedespitechaos @Balancedinchaos]

#MEAwarenessMonth #ME #MyalgicEncephalomyelitis

[balancedespitechaos @Balancedinchaos]

@Sabrina_Poirier I was dx in 2008 and in that time, the understanding, acceptance & treatment of me as a #pwme are worse today than they were then.

[balancedespitechaos @Balancedinchaos]

@DrEliDavid When leaders said we cdn't visit family, go to our cottages, had to stay home, bcz we were all gonna die if we did, then immediately did all those things (one visited family in a diff prov & posted it on social media). They weren't nearly as afraid as they told us we should be.