MSN

People with ME have key genetic differences to other people, study finds

#SevereMEAwarenessWeek #SME2025
#PwME #MEnotCFS #MEresearch #MyalgicE

www.msn.com/en-gb/health...

@meassociation.org.uk

#SevereMEAwarenessWeek #SME2025 #BelieveME
#PwME #MEnotCFS #MyalgicE

This week is #SevereMEawarenessWeek
Those with SME are hidden from view,often abandoned,left to struggle.
Severe ME can mean being trapped,you are housebound(like me) &/or bedbound,no escaping.
Yet, so many don’t even believe ME is real.
#SevereMEAwarenessWeek #SME2025
#PwME #MEnotCFS #MyalgicE

@meassociation.org.uk
#SevereMEAwarenessWeek #SME2025 #BelieveME
#PwME #MEnotCFS #MyalgicE

This week is #SevereMEawarenessWeek
Those with SME are hidden from view,often abandoned,left to struggle.
Severe ME can mean being trapped,you are housebound &/or bedbound,no escaping.
Yet, so many don’t even believe ME is real.
#SevereMEAwarenessWeek #SME2025 #BelieveME
#PwME #MEnotCFS #MyalgicE

Most Troubling Symptoms in ME/CFS and Long COVID Patients. The bar graph shows the frequency of symptoms reported by patients with ME/CFS (blue) and Long COVID (red), ordered based on the frequency in Long COVID patients. ✔️Fatigue or low energy ✔️Feeling worse after normal exertion (PEM) ✔️Brain fog ✔️Un-refreshing sleep ✔️Memory problems ✔️Fast, fluttering or pounding heartbeat ✔️Feeling of weakness ✔️Shortness of breath ✔️Insomnia ✔️Headache or migraine ✔️Postural orthostatic tachycardia (POTS) ✔️Lightheadedness or dizziness ✔️Sore/painful muscles ✔️Chest pain ✔️Tinnitus ✔️Other digestive problems ✔️Numbness or tingling ✔️Joint pain or swelling ✔️Stiff or painful neck ✔️Cold or discolored hands/feet ✔️Balance problems or sense of room spinning ✔️Muscle twitches, spasms, or fasciculations ✔️External or internal tremors (vibrations) ✔️Nausea and/or vomiting ✔️Sore throat, fever or flu-like symptoms ✔️Shooting, stabbing or burning pain ✔️Disordered taste/smell #SevereME #pwME #MyalgicE #SevereMEAwareness #MECFS #SevereMEAwarenessWeek

Most Troubling Symptoms in #MECFS and #LongCOVID Patients. The bar graph shows the frequency of symptoms reported by patients with ME/CFS (blue) and LC (red), ordered based on the frequency in LC patients.

#SevereMEAwareness #SevereMEAwarenessWeek #pwME

IMAGE DESCRIPTION: Photo of a man lying in bed in the dark. Photo of the booklet, a white page with text on. Heading - Free Literature: Severe ME

MEA Information on Severe ME:

The information on severe ME taken from the ME Association ME/CFS/PVFS Clinical & Research Guide 2022 Edition (The ‘Purple Book') is now available to download for free.

Download: https://meassociation.org.uk/kgq5

#SevereME #SevereMEAwarenessWeek #SMEWeek2025

As we move into #SevereMEAwarenessWeek and #SevereMEDay on August 8, this post by Dan Wyke @Dan_Wyke is a good reminder. "Good depiction of everyday difficulties faced by #pwME which many healthy people. aren't aware of. Simply being is a struggle and can trigger PEM. Illustration by Franzi (@elohopea3) who shares more of her work at instagram.com/francesha." Myalgic Encephalomyelitis / Chronic Fatigue Syndrome NOTHING IS AS RELAXED AS IT SEEMS THIS IS IMPOSSIBLE AT THE SEVERE STAGE! ✔️ Listening & understanding ✔️ Thinking ✔️ Emotions ✔️ Holding one's head up ✔️ Speaking loudly and clearly enough ✔️ Finding words ✔️ Forming sentences ✔️ Breathing ✔️ Circulation eg. Sufficient blood flow to the head ✔️ Looking at SB ✔️ Upright posture through the trunk muscles ✔️ Holding a cup ✔️ Tolerating background noise ✔️ Temperature regulation ✔️ Tolerating light #MECFS #MyalgicEncephalomyelitis

Moving into #SevereMEAwarenessWeek & #SevereMEDay on Aug 8

"Good depiction of everyday difficulties faced by #pwME which many healthy people. aren't aware of. Simply being is
a struggle and can trigger PEM. Illustration by Franzi (@elohopea3) who shares more of her work at instagram.com/francesha."

Sign the Petition The NHS must take measures to STOP Dill deteriorating

Petition · The NHS must take measures to STOP Dill deteriorating ✍️ 🙏 -
#PwME #SevereME #MEawareness #SevereMEawarenessWeek #MyalgicE #MEnotCFS
Another person with ME being mistreated by the NHS, this is a shockingly sad situation, happening too often😡 www.change.org/p/the-nhs-mu...

As we move closer to #SevereMEAwarenessDay on Aug 8 and #SevereMEAwarenessWeek, I'll be sharing from our #SevereME community and hoping these words helps others. "Hope is the toxic thing that keeps me alive and suffering For years I found myself in a continuous adrenaline crash due to my #MECFS. Life became a mere survival, navigating through unbearable suffering. Yet, surviving with this level of physical suffering was somewhat easier for me because such suffering consumes one's thoughts entirely. My mind became preoccupied with the physical suffering and wanting to die. I felt no hope. At least I was sure about one thing: my wish that this suffering would end. But now that my adrenaline crash has subsided with the help of medication and radical rest, I find myself in no man's land. The unbearable internal suffering has diminished, but I'm still too unwell to lead a normal life. My days consist of staring at the ceiling, contemplating what I can still contribute to this world, why I exist and what purpose remains. I feel an overwhelming urge to scream to the outside world, to doctors and other caregivers. Yet, I know I will be a voice lost in the wilderness. A sense of existential emptiness creeps up on me and that pain runs deep." Credit @ChronicMyalgicE

As we move closer to #SevereMEAwarenessDay on Aug 8 and #SevereMEAwarenessWeek, I'll be sharing from our #SevereME community and hoping these words helps others.

"Hope is the toxic thing that keeps me alive and suffering." #MECFS

Credit @ChronicMyalgicE

@meassociation.org.uk

#PwME #SevereMEAwarenessWeek #SME2025

IMAGE DESCRIPTION: Photo of an empty bed in a dark room. Heading - What do you wish people knew about Severe ME?

We want you to tell us what you wish people knew about Severe ME - is there one thing that you think is really important? 

Let us know in the comments, and help us to raise awareness this Severe ME Week (4th-10th August 2025)

#MyalgicEncephamyelitis #SevereME #SevereMEAwarenessWeek #SMEWeek2025

Today marks the start of Severe ME awareness week.
People with severe ME are hidden from view & can be totally housebound and/or bed bound.
I have had ME for over 25 years, I have been totally housebound for over 2 years now(& for longer spells before this). #PwME #SevereMEAwarenessWeek #SME2025