Jessika Fernström

Leader in marketing and business development interupted by ME/CFS. Dedicated to spread knowledge about ME/CFS and any related illnessses/situations.

[Open Medicine Foundation @OpenMedF]

In this interview, Dr. Jonas Bergquist and Dr. Alain Moreau talk about their main ideas behind #MECFS, including an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed.

👉 https://t.co/RVs12yPvLX.

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Persistent fatigue that is not alleviated by rest is one of the cardinal symptoms of #MECFS. It may seem trivial and is often cartooned as “being tired,” but the fatigue is profoundly disabling—far worse than in most illnesses—and is only one of many symptoms. #MEAwarenessHour

[Jessika Fernström @jessikafe]

@iamyesyouareno Nationalist party "news" in 2018. You really got your facts clear.

[Jessika Fernström @jessikafe]

Debattartikel om ME i @altingetse idag. Tack!

https://t.co/IooPg6Init

[Jessika Fernström @jessikafe]

@Ur_Gammal @AnderssonUlla Nej, se på USA. Detta är ett steg att "legalisera" dessa tankar för att sedan ta helt regelrätta steg från demokrati och folkets vilja. SD försöker göra detta genom att sprida desinformation och M mm låter det hända plus agerar minst sagt mjäkigt mot ytterst farliga aktivklubb.

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

New results from Dr. Jarred Younger: The #MECFS brain is inflamed!
https://t.co/fz41j8uqcc

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Did you know that radiological brain scans of patients with #MECFS have shown increased temperature, increased levels of lactate, microglia/astrocyte activation, and functional and structural abnormalities? This suggests an underlying pathology in the brain. #MEAwarenessHour

[Maureen Hanson @DrMaureenHanson]

The latest paper from the Cornell ME/CFS Center is in PNAS today. RNA released into the blood differs in cases vs sedentary controls, who can be distinguished at 77% accuracy. Biological network analysis shows dysfunction of the immune system in ME/CFS, as in other assays.

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

Meaningful recognition from Maureen Hanson, a molecular biologist and Professor in the Department of Molecular Biology and Genetics at Cornell University, New York. Why do #MECFS patients never hear any such expressions of understanding or empathy from Wessely School members?

[World ME Alliance @WorldMEAlliance]

What if your body couldn’t bear light, sound, movement — or even touch?

Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years.

For people living with Very Severe ME, this isn’t a metaphor — it’s reality.
🧵

[Jessika Fernström @jessikafe]

@PlzSolveCFS @WorldMEAlliance I can not read or download. Do you know if there is a problem?

[davidtuller @davidtuller1]

DecodeME pre-print reported eight "genetic signals" involving immune function and the nervous system in people with ME/CFS. Many viewed the findings as of potential significance. One person did not. https://t.co/V3bZodkqZR

[Whitney Dafoe @DafoeWhitney]

A Moment of Silence for Severe ME/CFS Patients

Today we honor the sickest among us.  The ones who have been least lucky among some of the least lucky people on earth.  It is only bad luck that lands us with ME/CFS, none of us did anything to deserve this or to cause this.  And no one with severe ME/CFS did anything to wind up sicker than anyone else.

♿ 𝘈𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘪𝘭𝘪𝘵𝘺: 𝘓𝘪𝘴𝘵𝘦𝘯 𝘵𝘰 𝘵𝘩𝘪𝘴 𝘱𝘪𝘦𝘤𝘦 𝘳𝘦𝘢𝘥 𝘢𝘭𝘰𝘶𝘥:
https://t.co/vJp3kXYHno

The person most dear to me in this world has gone from moderate to extremely severe this spring and I weep for her everyday.  Because I know exactly what she is going through - it is absolute hell on earth - and I am completely helpless to help her or stop it.  All I can do is be here for her so she is not alone.

People living with severe ME/CFS lose every single thing that defines being human - every single one - and experience symptoms that no human should have to endure.  Unworldly symptoms that you could not imagine in your worst nightmare - until you experience it.  Dehumanizing, incapacitating, uncontrollable, reality bending.  It is torture for every single second of existence worse than anything most humans on earth will ever experience.

And these symptoms are layered with a lack of acknowledgement from the world that leaves these patients in the shadows of society as if they do not even exist anymore.  Or worse, lost on their own, abandoned and destined to die alone on the streets.  See my post "The True Horror of ME/CFS" where I walk you through the logical, factual steps that lead you to the hidden reality of what many severe ME/CFS patients face - dying alone on the streets.

https://t.co/YGZmnicMdU

Think about that combination.  Living in a world worse than Hell, and being completely abandoned by society with no help and a feeling of no hope to ever get better, nothing to look forward to but endless agony and rejection and loss.  Because when you are in that pit of severe ME/CFS, you have no contact with anyone or any way to know about research progress or anything hopeful.  You are isolated and alone with nothing but your mind and punishing, relentless, never ending suffering.

When you think about this, it is not a surprise that so many severe ME/CFS patients take their own lives.  But it is absolutely, unconscionably tragic and must end with real care, real treatments, and real, tangible hope.

Anyone reading this is better off than those who are most severe and we should all share the horrifying reality of our lives - whatever stage of ME/CFS we live with - through writing and photographs and anything else that makes sense to us.  And hope that someday someone listens.  But until the world turns an ear, an eye or hell, I’ll take a fucking toe, all we can do today is have compassion;  Offer our prayers and hopes and wishes.  And take a deep bow of respect to those clinging onto this life desperately, in absolute agony emotionally, physically and spiritually.

Today let’s take a moment of silence to honor severe ME/CFS patients.  Really.  Let’s all take a moment - even just 1 minute - right now and just hold still in silence with our eyes closed like many severe ME/CFS patients live all day everyday - and think of them.  You might not think this makes a difference, but it does, and I am asking you - all of you - please - take a moment for the least lucky amongst us.

To all those living in silence and darkness.  Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss.

We are here, we are praying for you and we understand.  And we are not going away.  We are right there beside you.  We are all in this together and stand united until the backs of society are turned towards us and the light of science and care and awareness finally shines.

Love,
Whitney 💙

#MECFS #MECFSAwarenessDay #SevereMECFSAwarenessDay #pwME

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Preprint of DecodeME genetic study: “People with an #MECFS diagnosis have significant genetic differences in their DNA compared to the general population. These lie in many places across the genome, and do not impact just one gene.”

https://t.co/bAW5xnLtaW

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Vink and Vink-Niese: “CBT and graded exercise therapy studies have proven that ME/CFS and long COVID are physical diseases, yet no one is aware of that.” https://t.co/hiEoVeGN6K

[davidtuller @davidtuller1]

I always find @mecfsskeptic's threads on studies to be very helpful and well-done.

[Tom Kindlon @TomKindlon]

"CBT and graded exercise therapy studies have proven that ME/CFS and long COVID are physical diseases, yet no one is aware of that" by @Huisarts_Vink

https://t.co/hoMUrlCqk0

Screenshot from July AMMES email newsletter

#LongCovid #MEcfs

[Open Medicine Foundation @OpenMedF]

In collaboration with patient-scientist Martha Eckey, PharmD, Wenzhong Xiao, PhD, and his team have released a publication on a project analyzing patient-reported treatment outcomes in #MECFS and #LongCOVID.

Read about this study in Health Rising👉 https://t.co/LJaQSTbBRN.

[Janet Dafoe @JanetDafoe]

Important article showing oxidative stress in patients, which has potential effects that are being explored, like oxidizing a number of metabolites that could cause symptoms.
Oxidative stress is a shared characteristic of ME/CFS and Long COVID | PNAS https://t.co/4nQqXuOjoS

[Jessika Fernström @jessikafe]

@Dempaslotteborn @Autonic_ @anderslindberg Därför måste vi förändra den trenden. Dagens regering fördjupar kriserna på exakt varje plan (förutom för de redan rejält rika). Vem kan tycka att detta är bra?