@Birdtableseed Profile picture

Birdtableseed

@Birdtableseed

Not always able to keep up with twitter due to ill health Our family lives with long term post viral illness called myalgic encephalomyelitis known as ME/CFS

Joined July 2022
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Pinned

Our family are hoping that updated health guidelines for ME/CFS will be implemented soon. Doctors are now officially instructed to provide medical support, disability aids and social care to ME/CFS patients. Change should have begun a year ago but still waiting … NG206 / 2021


Birdtableseed Reposted

'We were told by many people that the current treatment they're receiving is harmful.' The lead researcher on the Decode ME Study, Professor Chris Ponting, outlines the responses he has received from ME patients on their care. trib.al/Rx0iR33 📺 Sky 501


Birdtableseed Reposted

A promise by @NHSEngland to "review ME services" sounds like a way to placate patients and further delay meaningful change. If they were serious about implementing change, they would have done so in 2021, immediately after the release of NICE guidelines. #MyalgicEncephalomyelitis

'NHS to review ME services after death of Maeve Boothby O’Neill' #myalgicencephalomyelitis #cfsme #myalgice #mecfs thetimes.com/uk/healthcare/…



Birdtableseed Reposted

I am asking my new colleagues @BrockAnnaDr @GrandeBettina and @GrandeTilman for their support with the #LemonChallengeMECFS. Together we try to establish care structures for patients suffering from very severe MECFS. And we need a lot more support.

Supporting the #LemonChallengeMECFS. The lemon as a symbol for the bitterness of the disease but also for the hope of healing. Please share and support the @MECFSResearch Foundation.

C_Scheibenbogen's tweet image. Supporting the #LemonChallengeMECFS. The lemon as a symbol for the bitterness of the disease but also for the hope of healing. Please share and support the @MECFSResearch Foundation.


Birdtableseed Reposted

"Brexit has ruined this country, and now the majority of Britons thinks so too." RT if you are that majority.


Birdtableseed Reposted

The latest paper from the Cornell Center is available at the PNAS website. Our study implicates T cell exhaustion in ME/CFS.

DrMaureenHanson's tweet image. The latest paper from the Cornell Center is available at the PNAS website.  Our study implicates T cell exhaustion in ME/CFS.

Birdtableseed Reposted

1) Which ME/CFS studies did the National Institutes of Health (NIH) fund in 2024? We published a new blog post that briefly describes all projects. mecfsskeptic.com/nih-funding-fo…


Birdtableseed Reposted

Just published: Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review scibasejournals.org/neurology/1022… #MEcfs


Birdtableseed Reposted

Am 12./13.5.25 findet die 3. internat. hybride MECFS Konferenz von Charité und @MECFSResearch statt u.a. mit @PutrinoLab @kahryn_hoffmann @kjtronstad @steinacker_jm @chris_puta @neurostingl @DrDenDunnen Øystein Fluge David Systrom Yehuda Shoenfeld mecfs-research.org/news-events/me…


Birdtableseed Reposted

We are looking forward to attending the International ME/CFS Conference with such a great line-up of competent clinicians and researchers! Thanks to @C_Scheibenbogen and @MECFSResearch for organizing this important conference! #MECFS #PostCovid #LongCovid #MECFSConference

International #MECFSConference 2025 in Berlin. 📅 The 3rd meeting of the Fatigue Centre will take place on 12-13 May - and we are supporting it! ‘Understand, Diagnose, Treat’ is all about research & therapy for #MECFS & #PostCOVID. ➡️Details: mecfs-research.org/en/conference2…

MECFSResearch's tweet image. International #MECFSConference 2025 in Berlin. 📅 The 3rd meeting of the Fatigue Centre will take place on 12-13 May - and we are supporting it! ‘Understand, Diagnose, Treat’ is all about research & therapy for #MECFS & #PostCOVID. 
➡️Details: mecfs-research.org/en/conference2…


Birdtableseed Reposted

EMEA issued this statement at 74th Regional Committee Meeting for Europe on the agenda item discussing the State of Health in the WHO European Region europeanmealliance.org/emea-news-whoe…

EUROMEALL's tweet image. EMEA issued this statement at 74th Regional Committee Meeting for Europe on the agenda item discussing the State of Health in the WHO European Region
europeanmealliance.org/emea-news-whoe…

Birdtableseed Reposted

Therapiestudien zur Entfernung von Autoantikörpern sind dringend notwendig, die ersten Ergebnisse unserer Immunadsorptionsstudie bei MECFS zeigen dass es danach vielen besser geht. Wir bereiten Studien mit Medikamenten zur B-Zell-Depletion vor, aber es dauert leider alles so lang

Neben den IgG-Transfer Studien für mich die bislang wichtigste Arbeit zu Autoantikörpern nach COVID, die bei mehr als der Hälfte und gegen ein breites Spektrum von Autoantigenen, häufig Nerven und Muskeln nachweisbar sind und mit PC Symptomen korrelieren. pubmed.ncbi.nlm.nih.gov/39414823/



Birdtableseed Reposted

Last month 200+ healthcare workers wrote to Wes calling for urgent action to make NHS care safe for people with ME. He hasn’t yet responded. A recent coroner’s report said that more lives are at risk without change. Can he give us an answer live on air? thetimes.com/uk/healthcare/…


Birdtableseed Reposted

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot theguardian.com/commentisfree/…


Birdtableseed Reposted

Tweeting for 💙#KarenGordon #SevereME being mistreated by her NHS Trust. Bed-bound & cannot eat or drink. #DontLetMEDie #GreatestMEdicalScandal #pwLC #pwME The Times will publish her story on Monday 14th Oct 💙 Sign ✍️ & learn more here - change.org/p/save-karen-g…

JennieJacques1's tweet image. Tweeting for 💙#KarenGordon #SevereME being mistreated by her NHS Trust. 
Bed-bound & cannot eat or drink.

#DontLetMEDie #GreatestMEdicalScandal #pwLC #pwME

The Times will publish her story on Monday 14th Oct 💙

Sign ✍️ & learn more here - 

change.org/p/save-karen-g…
JennieJacques1's tweet image. Tweeting for 💙#KarenGordon #SevereME being mistreated by her NHS Trust. 
Bed-bound & cannot eat or drink.

#DontLetMEDie #GreatestMEdicalScandal #pwLC #pwME

The Times will publish her story on Monday 14th Oct 💙

Sign ✍️ & learn more here - 

change.org/p/save-karen-g…
JennieJacques1's tweet image. Tweeting for 💙#KarenGordon #SevereME being mistreated by her NHS Trust. 
Bed-bound & cannot eat or drink.

#DontLetMEDie #GreatestMEdicalScandal #pwLC #pwME

The Times will publish her story on Monday 14th Oct 💙

Sign ✍️ & learn more here - 

change.org/p/save-karen-g…

Recent Muscle experiment using sera from ME and Long Covid patients transferred to in vitro muscles resulted in seen mitochondria dysfunction hypothesised leading to severe muscle problems. sciencedirect.com/science/articl… Just a Screenshot

Birdtableseed's tweet image. Recent Muscle experiment using sera from ME and Long Covid patients transferred to in vitro muscles resulted in seen mitochondria dysfunction hypothesised leading to severe muscle problems.

sciencedirect.com/science/articl…

Just a Screenshot


Recent Muscle experiment using sera from ME and Long Covid patients transferred to in vitro muscles resulted in seen mitochondria dysfunction hypothesised leading to severe muscle problems. sciencedirect.com/science/articl… Just a Screenshot

Birdtableseed's tweet image. Recent Muscle experiment using sera from ME and Long Covid patients transferred to in vitro muscles resulted in seen mitochondria dysfunction hypothesised leading to severe muscle problems.

sciencedirect.com/science/articl…

Just a Screenshot

Birdtableseed Reposted

Maeve died in 2021 after suffering from ME for a decade, a coroner looking into her death has called on the NHS to drastically improve the care for ME patients. Her mother Sarah Boothby tells @skysarahjane, Maeve was "a dream daughter." trib.al/Rx0iR33 📺 Sky 501


Birdtableseed Reposted

Full Segment (4 mins 30) BBC Radio 4 The Today programme. @TimesONeill talks about the prevention of future deaths report following the death of his daughter Maeve Boothby O'Neill who died from Severe #ME youtu.be/T4m1bLMgsI8?si…


Birdtableseed Reposted

TW: Full segment - BBC Breakfast on the landmark prevention of future deaths report following the death of Maeve Boothby O'Neill from Severe #ME. Includes interview with Maeve's mum Sarah Boothby (@swastrosarah) youtu.be/dH_CESZmmQA?si…


Birdtableseed Reposted

ICYMI: 🚨A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study 🚨 Read now 👉 ow.ly/SieS50TEoYX. #pwME #OMFResearch #MECFSresearch #MECFS

OpenMedF's tweet image. ICYMI: 🚨A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study 🚨

Read now 👉  ow.ly/SieS50TEoYX. 

#pwME #OMFResearch #MECFSresearch #MECFS

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