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Sammy | MECFS Advocacy

@m.e_and_more

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Education and #disabilityJustice with #severeME #MECFS #behcets and #complexChronicIllness. #millionsmissing #bedbound #autistic #queer #solarpunk

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Masking doesn’t mean you can’t still develop ME (he was masking), but it does reduce risk. And if more people masked, the world would be safer and more accessible for so many people.

Every time you choose not to mask, you’re sending a message to disabled people that their safety doesn’t matter. Masking is a direct way to show care for your community, even if you don’t think your individual choice matters.

We don’t have to be perfect at it. Practice wearing one around the house. Find masks that work better for you. Work through the discomfort and biases you hold.

And please, stop saying you care about disabled people while refusing to take basic steps to help protect them.

Caring about disabled people requires caring about disabled people when it inconveniences you, too.

(follow the tagged people to learn more directly from those living with ME)

#wearamask #myalgicencephalomyelitis #severeME

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Final part to this series 💫

#myalgicencephalomyelitis #meawareness #caregiver

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This Blue Sunday, I am thinking of Sammy and all those with ME/CFS, especially those who are severe and very severe. Back in 2024 and 2023, when I was still able to help care for her, we got out the blue decorations, the blueberry waffles and pancakes. Food was one of the last things she could enjoy, besides her precious time with the online ME/CFS community.

I’m sharing a bit of her today with this blueberry white chocolate chip cookie recipe, developed by her home cook, Linda, for her low-histamine diet (due to MCAS). In the last year, Linda and I have been putting together a low-histamine cookbook in Sammy’s honor, since she often wished she were able to share these recipes with her community. The recipes will be free and available on Sammy’s website once the time comes (link in bio). The cookie recipe is there now, the rest to come later!

In her 2024 Blue Sunday post, Sammy wrote:

“Over 1 in 100 people suffer from Myalgic Encephalomyelitis, or #MECFS. 25% are housebound or bedbound with #severeME. 70% are unable to work.

So many people with ME are left alone. Despite being more disabling than most cancers, their disease is so stigmatised that they do not disclose it or do and are ostracised or simply told to get over it. Lack of disclosure leads to further stigma. It is why days like #BlueSunday are so important. To create accessible spaces for #pwME to interact with others. To bring visibility to ME / #CFS and #longCovid through a lighthearted day.”

This Blue Sunday is a great time to learn more (Sammy’s posts and website are a great resource) and to donate to ME/CFS research through Open Medical Foundation ( @openmedf ). A link to donate is in our profiles. A treatment or cure is the only hope for so many people with ME/CFS, and the only way it will happen is with more funding, support, and global attention.

There are also many people in the ME/CFS community doing incredible work for awareness, mutual aid, and advocacy. Two of those are Sammy’s friends as well, but there are many others that you should feel free to tag in the comments! @franhaddock_ @amelia.viviennesuying Low histamine blue berry white chocolate chip cookie picture

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Today is Myalgic Encephalomyelitis (ME) Awareness day. Read about it. Learn from those with ME. Wear a mask. Please.

To those with ME, I’m so sorry. Validation and compassion aren’t enough. You all deserve so much more.

To those that love someone with ME, I see you. The grief is immense for all involved.

#meawarenessday #myalgicencephalomyelitis

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🤘the owner of this account has recently been in a flare up and dealing with the grief of accepting that I have been navigating mild ME for years with no medical support. I am grateful that my baseline has improved from where it used to be (moderate) but I feel that people who have already been disabled by COVID can sometimes be left out of the still-COVIDing conversation. Please think of us, especially this month, and research ME!

The person who made the graphic on the second slide passed away from very severe ME in 2024. Thank you Sammy for all of your educational resources, which have helped me a lot as I’ve researched my own condition. Rest well.

Flyer text:
MAY 12
MYALGIC ENCEPHALOMYELITIS AWARENESS DAY
Formerly known as “chronic fatigue syndrome,” ME is frequently comorbid with Long Covid and other post-viral illnesses and can drastically limit daily function and quality of life. As you go about your regular activities with a mask on, remember those who no longer can! Advocating for COVID safety and breaking chains of transmission helps us all.

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May 12 is International ME/CFS and Fibromyalgia Awareness Day 💙

Millions of people worldwide live with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia — complex chronic illnesses that are often misunderstood, dismissed, or overlooked.

ME/CFS is a debilitating condition that can cause profound fatigue, post-exertional malaise (symptom crashes after physical or mental activity), brain fog, sleep disturbances, pain, and autonomic symptoms. According to the CDC, up to 3.3 million Americans may be living with ME/CFS, and many remain undiagnosed.

Fibromyalgia affects an estimated 4 million U.S. adults and is associated with widespread pain, fatigue, sleep problems, and cognitive difficulties often referred to as “fibro fog.”

For many patients, one of the biggest challenges is not just the symptoms themselves — but the disbelief, delayed diagnoses, stigma, and medical gaslighting they experience while trying to seek care and support.

Awareness days like today matter because they help make invisible illnesses visible.

To everyone in our community living with chronic pain, debilitating fatigue, uncertainty, or conditions others cannot see from the outside:
We see you. We believe you. And your experience deserves compassion, research, and better care.

💙💜 Share this post to help spread awareness and support.

#InternationalMECFSAwarenessDay
#MECFS
#FibromyalgiaAwarenessDay
#ChronicIllness
#InvisibleIllness

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💙 May is ME/CFS Awareness Month 💙
(And today, May 12th, is MECFS Awareness Day!)

ME/CFS:
ME/CFS is short for myalgic encephalomyelitis / chronic fatigue syndrome. Some common symptoms of ME/CFS are overwhelming fatigue, worsening symptoms after physical or mental activities, and problems with thinking, sleep, pain, and dizziness.

People with ME/CFS cannot function the way they used to before getting sick and often struggle with daily tasks, attending work or school, and having a social life.

Post-Exertional Malaise (PEM):
Post-exertional malaise (PEM) is the hallmark symptom of MECFS and is a flare-up of symptoms or the appearance of new symptoms after exertion. Physical activity, mental overexertion, and sensory overload can all trigger PEM.

Exertion is anything that can stress or strain the system, not simply exercise. Some triggers include standing or positional changes, long conversations, scholarly work, loud noises, bright lights, emotional interactions, and environmental changes.

Pacing:
Pacing is a strategy for managing symptoms, especially fatigue, by balancing rest and daily activities. People living with various health conditions, including ME/CFS, fibromyalgia, and chronic pain, utilize pacing to help with symptom management.

With ME/CFS, pacing can improve quality of life and prevent disease progression for many, but ME/CFS can still progress in some cases, especially if someone is caught in the boom/bust cycle (i.e., where people keep going past their limits and crash.

Energy envelope:
When an individual stays within their “energy envelope,” they have determined their energy limits for mental, emotional, and physical activities and stay within them. This is difficult to do as energy limits can change frequently and without warning.

According to a recent study on ME/CFS, energy envelope theory asserts that “patients who maintain their expended energy at a level consistent with their available energy will have better health outcomes and quality of life than those who over-expend their energy levels.”

#ThisIsME #MECFSAwareness #UnitedForME #MillionsMissing

TBC and IDs in comments. All tags in comments.

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Raffle closed

May is M.E Awareness month and Nafas needs your support!

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Art from
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#DisabledArt #Raffle #MEAwareness #Myalgicencephalomyelitis
Books, Lino prints, solidarity, wheelchair

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Hello friends, I hope you are all well. Unfortunately💔🥹, I have some bad news. I have cellulitis in my left leg, and I am experiencing severe pain and swelling. The doctors prescribed antibiotics, creams, and allergy pills, but unfortunately, I haven't been able to find these medications at any government clinic or hospital. Therefore, I have to buy them from a pharmacy, but they are very expensive, around $120. Please, I desperately need your help. 🙏😓#fundraiser #p#explorepage #gaza #instagramhub alestine🇵🇸

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Eid is approaching and sweets are starting to appear in the markets, but unfortunately😓, the prices are very high. One kilo costs 150 shekels, which is equivalent to approximately $50. Help us so we can buy sweets and make our children happy this Eid.🤍🤍 Every donation will bring joy to our children's hearts. Link in bio 👆🥹#gazaunderattack #freepalestine🇵🇸 #palestine🇵🇸 #fundraiser #instagramhub

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Please don't leave us alone; every donation, no matter how small, makes a big difference in our lives. 🙏🥹#gazaunderattack #freedom #freepalestine🇵🇸 #explorepage #palestine🇵🇸

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Please stay with us🤍🙏. Every donation, even a small amount, will greatly help save us from famine. Link in bio.👆🇵🇸🇵🇸#gazaunderattack #freedom #freepalestine🇵🇸 #palestine🇵🇸 #instagramhub

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