Aineemac 🙂🙃🌈☮️

#SevereME #Fibro #POTS #ChronicMigraines

Want to see Bio medical research for ME, adequate training, awareness & Advocacy services.

🙂🙃

[Hope 4 ME & Fibro NI @hope4mefibroni]

N.I. Clinicians, GPs, AHPs & researchers, your perspective matters. Be part of a national conversation on #ME & #LongCOVID that aims to translate evidence and experience into meaningful change. @HSCRandD @publichealthni @_NIMDTA @healthdpt @mikenesbittni
https://t.co/AyphG1a4PP

[Hope 4 ME & Fibro NI @hope4mefibroni]

Thank you to the incredible **19** family members & friends of @james_walton96 taking part in @belfastmarathon - raising funds for our all-volunteer-led charity 💪 💙
#Volunteers #MEawareness #Mayawareness #Hope #MyalgicEncephalomyelitis
https://t.co/vfUmQYNYng

[Aineemac 🙂🙃🌈☮️ @Aineemac82]

@quarecuttie @hope4mefibroni @belfastmarathon @mikenesbittni Not 1, I have spent weeks trying to navigate GP liscensing regulations for a mast cell stabiliser, trying to explain MCAS within private practice to get additional meds prescribed & trying to find a consultant in England that can advise and prescribe.

[Hope 4 ME & Fibro NI @hope4mefibroni]

#ME N.Ireland “There's no ME specialist-no ME clinics, no care pathway for severe ME...It is incomprehensible that so many patients are left without anything”
Mike is coming to ⁦@belfastmarathon⁩ fundraising for Invest in ME ⁦@mikenesbittni⁩
https://t.co/TNdpDkN4Ol

[Aineemac 🙂🙃🌈☮️ @Aineemac82]

@drclairetaylor @travellator3 Also any extremely valuable, cost effective and quick way to screen patients initially within Long Covid clinics for signs of POTS.

[Rebecca Logan♿🌻💙😷#FBLC @rebslogan]

Please give myself & the millions of others suffering with #ME hope, @wesstreeting @AshleyDalton_MP
#FundThePlan #ThereForME
@mikenesbittni @HSC_NI @ThereForME_UK

[Aineemac 🙂🙃🌈☮️ @Aineemac82]

@drclairetaylor @shirleypearceot 4/ Also helpful to say that ME in itself doesn't cause deconditioning, however inability to move when able & being confined to bed due to lack of suitable provision of safe accessible equipment surely would & that not having it would prevent rather than promote independence

[Aineemac 🙂🙃🌈☮️ @Aineemac82]

@drclairetaylor @shirleypearceot 1/ If there are issues exiting the home safely it could be mentioned as an access issue/fire risk. Mast Cell symptoms for me were better with fresh air when I could do so. Citing safety/access and worsening of Mast Cell due to dust in home can help. As can community fire/rescue

[Aineemac 🙂🙃🌈☮️ @Aineemac82]

@drclairetaylor @shirleypearceot 3/ Options also differ depending on private/social housing. System different here but a change in circumstances or safety concern currently can help trigger a reassessment of current provisions under OT/housing which would further flag stairlift & need for access to garden.

[Aineemac 🙂🙃🌈☮️ @Aineemac82]

@drclairetaylor @shirleypearceot 2/ It was only highlighting these finally got powers here to look at suitable adaptions & safe exit in emergency - resulting in suitable wheelchair now ordered. Turntous & similar used have good grants to help with adaptions to promote independence. Better in England than N.I

[Ror Preston @RorPreston]

A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐

@NIHRresearch and @UKRI_News we need ring-fenced funding for ME as part of the Delivery Plan

Thank you to @mediumwhite & co. for analysis

[Joan McParland MBE-Never,ever felt ‘tired’ with ME @JoanMcparland]

Excellent piece from @rebslogan & @ThereForME_UK as those of us with pre-Covid #MyalgicEncephalomyelitis for decades, are still troubled with the same questions
why were we not believed?
Only a formal gov apology NOW will help us to begin healing THAT unimaginable mental trauma❤️‍🩹

[Hope 4 ME & Fibro NI @hope4mefibroni]

Thank you @ThereForME_UK for highlighting @rebslogan lived-experience of #LongCovid. We are privileged to have Rebecca spearheading this area of our work in N.I. and being a voice for all with #MyalgicEncephalomyelitis & LC 💙 🤍

[Joan McParland MBE-Never,ever felt ‘tired’ with ME @JoanMcparland]

#ME #earseeds Big coverage U.K. wide, except NI where we have estimated 7500 #ME patients
@News_Letter @BelTel @Lisa_J_Smyth
Facts‘ catchup here 👇
https://t.co/rO8cY70lyL
All major charities have sent formal complaint, including @hope4mefibroni
here https://t.co/JsYkJLeCzp

[Aineemac 🙂🙃🌈☮️ @Aineemac82]

@Dan_Wyke Also traumatic remembering they used BBC to get UK to sing happy birthday & wash hands for an airborne virus affecting breathing. Daily breathing exercises to help increase lung capacity,vitamin D from sun, fresh air? 🤯

[Hope 4 ME & Fibro NI @hope4mefibroni]

One of our #SevereME members shares her gratitude to staff @WesternHSCTrust for accommodating light & noise intolerance, a mostly unknown (by non-#ME sufferers) symptom which can dramatically hasten #PENE #PEM
even without physical exertion
@careopinion
https://t.co/ENIZjBLaQE

[Joan McParland MBE-Never,ever felt ‘tired’ with ME @JoanMcparland]

The horror of #SevereME then to learn good people tried to advise/intervene-Dear God WHY
“The hospital did not follow Dr Weir’s advice. The doctor, Boothby wrote, was “adamant she would not tube feed Maeve and told Maeve she would ‘feel much better if you gave your hair a wash.’”

[Times Radio @TimesRadio]

“The state was unable, and to some degree, unwilling to treat her.”

As his daughter with severe ME was dying "a painful and difficult death", Times journalist Sean O'Neill says he had to “fight” for her palliative care "because doctors didn't believe in ME”.

@TimesONeill

[davidtuller @davidtuller1]

As always, it was great to work with my friends and colleagues @b_m_hughes and Steve Lubet. Enough with the psycho-babble and egregiously flawed research into psycho-behavioral treatments for ME/CFS and long Covid.