Fatigo_ME

#MECFS #Lyme recovery & creating awareness. Research, News, Views & Functional medicine approaches to healing #biohacking. Former Architectural designer on hold

[Fatigo_ME @Fatigo_MECFS]

Existing M.E. Findings that relate to each of the 8 genetic signals found in the #DecodeME study:
#pwme #mecfs #myalgicE

[Grok @grok]

Limited RCTs exist for ME/CFS biomarkers; most from case-control studies. Related abnormalities:

1. RABGAP1L (infection response): Persistent EBV/HHV-6 markers (Brenu 2013).

2. BTN2A2 (T-cell immunity): T-cell exhaustion (Mandarano 2024).

3. FBXL4 (mito DNA): Impaired ATP production (Tomas 2017).

4. SUDS3 (microglial inflammation): Elevated neuroinflammation (Nakatomi 2014 PET).

5. OLFM4 (neutrophil responses): Increased neutrophil apoptosis (Kennedy 2004).

6. CCPG1 (ER stress/autophagy): ER stress markers (Nguyen 2019).

7. CA10 (synaptic/pain): Central sensitization (Nijs 2012 review).

8. ARFGEF2/CSE1L (inflammation): Raised TNF-α/IL-6 (Maes 2012)Limited RCTs exist for ME/CFS biomarkers; most from case-control studies. Related abnormalities:

1. RABGAP1L (infection response): Persistent EBV/HHV-6 markers (Brenu 2013).

2. BTN2A2 (T-cell immunity): T-cell exhaustion (Mandarano 2024).

3. FBXL4 (mito DNA): Impaired ATP production (Tomas 2017).

4. SUDS3 (microglial inflammation): Elevated neuroinflammation (Nakatomi 2014 PET).

5. OLFM4 (neutrophil responses): Increased neutrophil apoptosis (Kennedy 2004).

6. CCPG1 (ER stress/autophagy): ER stress markers (Nguyen 2019).

7. CA10 (synaptic/pain): Central sensitization (Nijs 2012 review).

8. ARFGEF2/CSE1L (inflammation): Raised TNF-α/IL-6 (Maes 2012)Limited RCTs exist for ME/CFS biomarkers; most from case-control studies. Related abnormalities:

1. RABGAP1L (infection response): Persistent EBV/HHV-6 markers (Brenu 2013).

2. BTN2A2 (T-cell immunity): T-cell exhaustion (Mandarano 2024).

3. FBXL4 (mito DNA): Impaired ATP production (Tomas 2017).

4. SUDS3 (microglial inflammation): Elevated neuroinflammation (Nakatomi 2014 PET).

5. OLFM4 (neutrophil responses): Increased neutrophil apoptosis (Kennedy 2004).

6. CCPG1 (ER stress/autophagy): ER stress markers (Nguyen 2019).

7. CA10 (synaptic/pain): Central sensitization (Nijs 2012 review).

8. ARFGEF2/CSE1L (inflammation): Raised TNF-α/IL-6 (Maes 2012).

[Anil van der Zee © @AnilvanderZee]

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME.

It is one of the only places where the sickest patients can receive specialised care.

We need this everywhere!!

#pwme #myalgicE #millionsmissing #severeME

[Adam @ABrokenBattery]

BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project.

Unfortunately @DrOscarDuke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

[Fatigo_ME @Fatigo_MECFS]

7 Days left to watch Team GB's 🇬🇧 Montell Douglas & @actionforme Lifeline Appeal for #myalgicencephalomyelitis awareness/research
Donate £10, £20 or £30 https://t.co/sJz5u8qbML #bbcaq #bbcnews #bbcbreakfast #pmq #bbcqt #bbcsport #newsnight #r4today #theoneshow #LabourLeadership

[Fatigo_ME @Fatigo_MECFS]

7 Days left to watch Team GB's 🇬🇧 Montell Douglas & @actionforme Lifeline Appeal for #myalgicencephalomyelitis awareness/research
Donate £10, £20 or £30 https://t.co/sJz5u8qbML #bbcaq #bbcnews #bbcbreakfast #pmq #bbcqt #bbcsport #newsnight #r4today #theoneshow #LabourLeadership

[Alex Macdonald @alexfmac]

Did you know our ‘national treasure’ NHS still only approves Cognitive Behavioural Therapy as treatment for ME?

Simultaneously: they ban people with ME from donating blood…

Gaslighting millions of people all to save money.

A travesty and betrayal of patients.

[Department of Health and Social Care @DHSCgovuk]

We're investing in a world-leading study helping scientists understand Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

The research will created a detailed picture of ME, a debilitating condition that affects hundreds of thousands of people.

https://t.co/nsei43mWhl

[Whitney Dafoe @DafoeWhitney]

We Need Your Help

Imagine starving to death and being allergic to all food.  And everyday trying to decide between starvation and a deathly allergic reaction.  ME/CFS is like an allergy to energy expenditure.  Imagine everyday trying to decide between doing something that makes you feel alive or deathly sickness.  The more you do, the less alive you feel.  And the less you do, the less alive you feel.  And the more you do, the less you are physically capable of doing.  That is ME/CFS.  Everyday.  For decades.  

But if you don’t have ME/CFS, and are not allergic to life itself, you could decide right now to help us.  And it won’t cost you anything but an extra work day, or one less toy or luxury, or some other small sacrifice in an otherwise life full of blessings and opportunity.  Which I would not want to take away for a second.  But a small sacrifice from you would go a long way towards helping people living in absolute hell.  

Go here to donate to ME/CFS research: 
https://t.co/Ru1nyvjQqq

Learn more about ME/CFS here:
https://t.co/Umhh7me9eO

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#mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie

[Fatigo_ME @Fatigo_MECFS]

Mind-body "CFS" coaches are orchestratedly using ME awareness day & Millions missing to promote their programs on Instagram. Just find this so disappointing - literally any other day but today! Just watched one and her story involved Chronic fatigue for 6 months.... #pwme #mecfs

[Steven Shorrock @StevenShorrock]

My brother Gary Shorrock is taking on one of Britain’s most demanding endurance challenges for @MEResearchUK : the Bob Graham Round in the Lake District

To complete it, he must cover around 66 miles, summit 42 fells, and climb more than 8,200 metres (approximately 26,900 feet of ascent) all within 24 hours. That means steep, rocky, boggy terrain, long hours on the move, and likely sections in darkness and harsh has been weather. The Bob Graham Round is an exceptional test of endurance, preparation, judgement, and determination. Only aound 3000 people have ever achieved it.

Gary has previously undertaken major endurance events and fundraising challenges, raising over £20,000 for an Alder Hey children’s hospital. This time, he is taking on the Bob Graham Round to raise money for a devastating yet underfunded condition.

ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) is a serious, disabling, life-altering illness. It can leave people unable to work, study, socialise, or manage ordinary daily activities. In severe and very severe cases, it confines people to their beds. Research has shown that quality of life for people with ME/CFS can be among the worst reported for any medical condition.

Research has shown that quality of life for people with ME/CFS can be among the worst reported for any medical condition.

Scientific research is increasingly identifying objective biological abnormalities in ME/CFS, including in blood, immune and metabolic function. Yet despite its severity, the illness has remained profoundly underfunded for decades.

The funds raised through this challenge will go to ME Research UK, a charity that commissions and funds high-quality biomedical research into the causes, consequences, and treatment of ME/CFS.

The work of @MEResearchUK reflects the urgent need for better scientific understanding of a disease that affects hundreds of thousands of people in the UK and leaves many housebound or bedbound, with their lives on hold.

This fundraiser has been co-organised by Gary Shorrock and me, his brother, after learning more about the enormous impact of ME/CFS, its extremely poor quality-of-life burden, and the longstanding lack of research funding devoted to the illness. The cause has become deeply important to the family. I was diagnosed with ME/CFS in November 2025 after 18 months of symptoms, post Covid.

Support for this fundraiser will help contribute to urgently needed research into a devastating and neglected illness.

Any donation would be greatly appreciated, and sharing the page would also make a big difference.

Thank you for your support. It means a lot.

https://t.co/LqLkKoyv73

[Steven Shorrock @StevenShorrock]

I really wish 24/7 headaches, fatigue, PEM, chronic IBS, that poisoned/hungover/flu feeling, and occasional gait instability, I wish new atrial fibrillation was in my head. As a psychologist, I’d know the difference, but so would most people. Pretty disappointed,
@amolrajan. Who next, a flat earther?

[Fatigo_ME @Fatigo_MECFS]

https://t.co/ZhVbL03TzP

[TSG Hoffenheim @tsghoffenheim]

𝗖𝘂𝗿𝗲 𝗠𝗘/𝗖𝗙𝗦 💙🤍

[Fatigo_ME @Fatigo_MECFS]

Great initiative in Germany @emptystands_me on behalf of #millionsmissing with #MyalgicE

@btsportfootball @BBCSport @DAZNFootball @TheAtlantic @kevinhatchard @andybrassell @honigstein @SkyFootball #football #Bundesliga #BBCFootball @adamsummerton @JamesHorncastle @talkSPORT

[Timo Strotmann @TweetingTimo]

In the Bundesliga match between @tsghoffenheim and @1FSVMainz05, players and referees gathered on the pitch before kickoff with a clear message: CURE ME/CFS!

Another powerful and successful campaign by https://t.co/XAHdFn0GHs

[TSG Hoffenheim @tsghoffenheim]

𝗖𝘂𝗿𝗲 𝗠𝗘/𝗖𝗙𝗦 💙🤍

[Fatigo_ME @Fatigo_MECFS]

@joskee_josi The best Easter present to #pwme worldwide. Thanks #hoffenheim and #mainz05. #bundesliga

[Timo Strotmann @TweetingTimo]

In the Bundesliga match between @tsghoffenheim and @1FSVMainz05, players and referees gathered on the pitch before kickoff with a clear message: CURE ME/CFS!

Another powerful and successful campaign by https://t.co/XAHdFn0GHs

[Fatigo_ME @Fatigo_MECFS]

@tiredguineapig Thanks Laina, Nasal Swab? Did you buy online? Or do you get a kit from NHS? Can someone take it in for you if you're housebound? What can you do about it now?

[Fatigo_ME @Fatigo_MECFS]

Read this the other day and was thinking about how after Cov infection 2021 and 2023, I've had almost constant toenail infection that's caused Hip pain and stiffness & increasingly bedbound too i.e. ME worse + also Skin rash, Ear infection. How would I ever know if I have Staph?

[BBC Wales News @BBCWalesNews]

Bang to nose left rugby star bedbound after rare infection spread to his bones https://t.co/fu9edTvxgD

[Fatigo_ME @Fatigo_MECFS]

It feels crazy to say but if you have #chronicillness, life was actually less difficult under a Conservative Gov than Labour, in regards to the Benefits and Medical system. Both much harder to navigate, have success. Labour blame Tories but why did Lab sacrifice most vulnerable?

[Fatigo_ME @Fatigo_MECFS]

@CharlotteCGill Any mention of Benefits by "Sickfluencers" is usually genuine information and guidance for existing #chronicillness patients who struggle greatly with the process as it's so difficult. It's altruistic influence. I doubt a well person would get very far with the process

[Fatigo_ME @Fatigo_MECFS]

@CharlotteCGill Indeed. I'm not even sure these so called Sickfluencers even exist either, whenever I've seen examples given it's literally patients who are advocating for themselves and raising awareness of their condition (POTS, MCAS etc). I think it's an invented term by some think-tank.