#meresearch

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So happy after yesterday's meeting with the work of @openmedf and the very inspiring Linda Tannenbaum. My ten year old said he only understood one thing from the speach: HOPE!

It is great to be a part of #openmedicinefoundation and this path of hope for a world full of ME-sufferers. Including me. A trip like this cost a lot - not only hotel and traintickets - but it is worth it. I feel worse today off course, but am very happy. Also happy that you helped me send 915 USD to OMF and ME-research yesterday. Thank you!
#mecfs #svmecfs #myalgicencephalomyelitis #meresearch

Wishing one of my besties the very best of luck ๐Ÿ€ when running ๐Ÿƒ๐Ÿป today's #GNR #GNR16 I've always wanted to run it but can't with having #myalgicencephalomyelitis so Michaela is running it for me and M.E. Thanks to everyone who has supported her and donated towards #investinme #meresearch Michaela you are and absolute ๐ŸŒŸ and I will be forever grateful ๐Ÿ˜˜

#IIMEC12 Preconferancedinner with some of our Excellent Norwegian researchers Katharina Lien, Ola Didrik Saugstad og Asgeir Lande๐Ÿ‘๐Ÿผ#millionsmissingnorway #millionsmissing #meresearch #myalgicencephalomyelitis

Some screenshots from @themightysite latest video covering the recent amazing results published from The Standford ME/CFS Initiative. @themightysite have briefly summed up key parts of the study in this video & and I wanted to share them as I know how hard reading research studies can be when we suffer cognitive impairment! However I will put a link to an article that was actually published before the study was as the researchers were so excited by their findings, in my bio, as there's a great YouTube video link in it that in helpful in understanding the inflammation markers. This is amazing news for all us #mecfs sufferers! #biologicalresearch ๐Ÿ’™#mecfs #meawareness #meresearch

Excited to be featured by BBC news! It should probably have been worded 'how I am fighting' rather than 'how I fought' as I'm definitely not out of the woods yet. But excited to tell my story for M.E. awareness. Such a misunderstood and underfunded/under researched illness. ๐Ÿ’™#myalgicencephalomyelitis #spoonieadventures

#MillionsMissing #Mecfs My shoes symbolising going off to live the life I have been missing from for nearly 17years.. And in protest of the millions missing in research needed to help the millions of worldwide sufferers. #Research #Meresearch #meawareness #InstaProtest

Dอ›Iอ›Aอ› Dอ›Eอ› Lอ›Lอ›Uอ›Vอ›Iอ›Aอ› y nosotras lo disfrutamos asรญ ๐ŸŒง๐Ÿ‘ฉ๐Ÿปโ€๐Ÿ’ป๐Ÿ‘ฉ๐Ÿฝโ€๐Ÿ’ปโ˜•๏ธ #MEresearch

Get your #ucb #calendars today! Calendars are going fast! Proceeds to go to #MEresearch

MOST RECENT

Duodenal Aspirate โœ”๏ธ Doneeeeee!
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When your GI compares your Oesophagus to that which is 'NOT in the shape of a DOUGHNUT' ๐Ÿฉ ..You know you're in good hands! ๐Ÿ˜ƒ๐Ÿ™๐Ÿฝ
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TOP Doc right there! ๐Ÿ˜‚ What an absolute legend!! Not to mention, he was tucking into some quality cake ๐ŸŽ‚๐Ÿฐ at 11.00am, like it wasn't nobodiesssss business. โœŒ๐Ÿฝ
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Today was such a GOOD day, and it was made easier by the wonderful staff at Knox Hospital!! ๐Ÿฅ Docs, Nurses, Admin - all with an AMAZING sense of humour, just wish all hospitals were as full of life!! ๐Ÿ˜œ
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The best part about that, is even though you are being wheeled โ™ฟ๏ธ around as a PATIENT you are treated as YOU. ๐Ÿ˜ The same as your FAMILY or best FRIENDS would, and that's so special. โค๏ธ
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Now to wait for the results, and see what all the fuss is about with DOUGHNUTS! โœŒ๐Ÿฝ๐Ÿ˜‚
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#Gastroscopy #MyDoctor #WhatALegend #OneStepCloser #Gastroparesis #Blessed #HealthJourney #LivingWithME #EatCake

โ€ข The FACTS on MECFS โ€ข
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ME has been classified as a neurological disease in the World Health Organisation's International Classification of Diseases since 1969.
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The average age of onset is 33. MECFS affects up to 1M Americans, 150,000 Australians, 125,000 British and as many as 17M people worldwide, many going undiagnosed.
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MECFS is a neuro immune condition with 25% of patients being bed bound, or housebound at some stage of their illness, often for months or years at a time.
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Currently there is no cure for MECFS, and the cause of MECFS is unknown.
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Collective research suggests that an initial immune system insult - usually a virus, toxic exposure, bacterial infection, trauma, or other physical stressors - trigger a cascade of immune system dysfunction that results in CNS/ANS dysfunction, with widespread consequences for the cardiovascular, gastrointestinal, endocrine and neurological systems.
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Antivirals and immune modulators have shown exciting promise, but funding for clinical trials has been scarce.
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During cluster outbreaks in the mid-1980s, the US government ignored ME experts, renamed and redefined this illness in several regions of the US to 'CFS' after a common symptom in numerous other diseases (i.e. 'fatigue') presented itself. The term 'MECFS' is now predominately used.
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Over late, the US government has recently elevated MECFS's priority, and the US Food and Drug Administration (FDA) now considers MECFS as "serious and life threatening", allowing treatments to be fast-tracked after decades of delay.
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Thankfully, there are many private and independent researchers in the US #OpenMedicineFoundation and AUS #UniMelbourne and #GriffithHealth who are shining a light on the seriousness and severity of the illness.
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Better diagnostic tools, along with new technology and treatments are slowly being developed, while researchers and patients alike are astounded that male pattern baldness receives nearly three times the funding of MECFS.
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It is one of my goals is for the #RealFacts about this illness to become common knowledge in the medical community.
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#MECFS17 #MECFSFacts

Listen to YOUR HEART โค๏ธ We hold all of the answers, if only we could take a step back and listen, would we realise the power inside all of us. #ListenToYourHeart

Some screenshots from @themightysite latest video covering the recent amazing results published from The Standford ME/CFS Initiative. @themightysite have briefly summed up key parts of the study in this video & and I wanted to share them as I know how hard reading research studies can be when we suffer cognitive impairment! However I will put a link to an article that was actually published before the study was as the researchers were so excited by their findings, in my bio, as there's a great YouTube video link in it that in helpful in understanding the inflammation markers. This is amazing news for all us #mecfs sufferers! #biologicalresearch ๐Ÿ’™#mecfs #meawareness #meresearch

Smile. It's just a bad day, not a bad life. #LivingWithME #MyMEJourney

Past Lessons. Present Gifts. Future Motivations. โค๏ธ #LivingWithME

โ€ข About Last Night โ€ข @unrestfilm @melbfilmfest @acmionline for the screening of Jen Brea's documentary UNREST. ๐Ÿ“ฝ๐Ÿ›๐ŸŽž
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I look like I'm about to step into a @vamff fashion show ๐Ÿ’ƒ๐Ÿผ๐Ÿ‘ channelling #AnnaWintour hard ๐Ÿ•ถโœŒ๐ŸฝOh but if only! ๐Ÿคž๐Ÿฝ It took every ounce of me to get out of bed ๐Ÿ› and make it to the screening of UNREST.
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The Sunglasses ๐Ÿ•ถ didn't come off the whole night, & the noise cancelling headphones ๐ŸŽง got me through the screening!! Sensory overload was in full over drive! ๐Ÿ™ˆ The walk back to the car felt like an incredible marathon! ๐Ÿƒ๐Ÿผโ€โ™€๏ธ Even though it was just over 100m!! ๐Ÿ˜‚๐Ÿ™ˆ
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This is all because I've been in a big crash since last Thursday, when I arrived back in Melbourne from Queensland. โœˆ๏ธ The flight was all just a bit much for my body, and even though I had assistance at the airport, โ™ฟ๏ธ I've been playing a game of catch up ever since. ๐Ÿ™ˆ
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Other then my doctors appointments ๐Ÿšช๐Ÿ‘จ๐Ÿปโ€โš•๏ธ I hadn't left the house since Thursday ๐Ÿก so it was an incredible effort getting to the screening!! ๐Ÿ™๐Ÿฝโ˜บ๏ธ
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I highly recommend UNREST to anyone wanting an insight into the lives of ME patients. It needs to be seen, it is confronting, and raw, and yet beautifully compelling at the same time. It leaves the viewer with a strong sense of purpose, and an undeniable rawness that continues long after the film finishes.
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#ME #MECFS #CFS #Unrest #TimeForUnrest #MIFF #MeAction #SevereMEDay #MyalgicencEphalomyelitis #MEAwareness #MEAware #MEResearch #ChronicIllness #ChronicallyIll #Documentary #Health #HealthAdvocate #Awareness #MedicalResearch #MedicalDiscoveries #MedicalBreakthroughs #MedicalResearch #Housebound #BedBound #StrongerTogether #Health #Life #Illness #TheMighty #CFSDiscovery #SolveMECFS

To the outside world you are young, beautiful and in your prime. ๐Ÿ‘ฑ๐Ÿผโ€โ™€๏ธYou have it ALL, ๐Ÿ™Œ๐Ÿฝ a career, a business you are passionate about, and a life many would dream of. ๐Ÿ˜ Things were going well for you, you worked hard, and you were ready to take it to the next level. ๐Ÿ”Everything was going just as planned. ๐Ÿคž๐ŸฝUntil one day, life as you knew it would be taken from you. Everything you knew about life, and people, and the world, no longer mattered. ๐ŸŒ It was as if everything you had learned before now was thrown out, discarded like useless junk at a garage sale. ๐Ÿ—‘You were thrown right into the deep end ๐ŸŒŠin an unfamiliar place, with no guidance, no help and no one to turn to. It was only YOU. ๐Ÿ‘ฉ๐Ÿผ All on your own and no one to turn to.
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In this world there were no RULES, โš–๏ธno CONSISTENCY, โณno PATTERNS, no easy way to navigate the pain and suffering, so you very quickly learned that to SURVIVE you had to ADAPT. ๐Ÿ’ช๐Ÿฝ And to stay above water you had to throw out every single ideal ๐Ÿ’กand construct ๐Ÿค”which you had spent 26 years developing; for it wouldn't cut it in THIS WORLD. ๐ŸŒ๐Ÿ™…๐Ÿผ You had to dig deep, and pull out the best performance of your life to get through this one! ๐Ÿ•ด
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This is the moment that EVERYTHING changed for me. My whole world was turned upside down. ๐Ÿ”›๐Ÿ”๐Ÿ”™๐Ÿ”œ๐Ÿ”š Everything was a mess! What once made sense now didn't. ๐Ÿคท๐Ÿผโ€โ™€๏ธ I would continue thinking that "tomorrow would be different" ๐Ÿคž๐Ÿฝand "things would go back to how they used to be" ๐Ÿ™๐Ÿฝthey had to I was only 26! I soon realised that this was no FUN ๐Ÿ˜›and GAMES ๐Ÿ€ this was LIFE and it just got REAL. โœŒ๐ŸฝNo it wasn't a dream, or a matter of 'thinking myself to wellness', ๐Ÿค” this was, and still is my now reality. I couldn't escape it, as much as I wanted to. I wanted so desperately for things to be NORMAL again, for it to be the way it was before that day. ๐Ÿ™๐Ÿฝ
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Time passed and I realised that my journey ๐Ÿ›คwas both a BLESSING ๐Ÿ‘ผ๐Ÿผand a CURSE. It is because of 'ME' that I am the person I am today, I have been forced to SHOW up, FRONT up, and STAND up in my truth, bare my vulnerabilities and confront some of the hardest realities I've ever had to face. ๐Ÿ‘Š๐ŸฝAnd just like that life becomes more...
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โฌ…๏ธโฌ…๏ธ SEE NEXT POST โฌ…๏ธโฌ…๏ธ

Excited to be featured by BBC news! It should probably have been worded 'how I am fighting' rather than 'how I fought' as I'm definitely not out of the woods yet. But excited to tell my story for M.E. awareness. Such a misunderstood and underfunded/under researched illness. ๐Ÿ’™#myalgicencephalomyelitis #spoonieadventures

I'm pleased to share the news that the petition I shared calling for a change in the NICE guidelines on care for ME patients particularly in regards to the PACE trial received 15,180 signatures in total!

Dr Shepard sent the petition off with a formal letter and received this response.
There is still hope that some positive change will happen. Thank you for everyone who supported the petition. #makethedifference #change #pacetrial #niceguidelines #meisreal #meresearch #medicalworld #petitions #important #investinme #meassociation #thankyou #touchboxtheatre

I got an M.E research box for the pub, no idea why I didn't think of it sooner! I emptied a couple of old boxes we had that are no longer collecting, plus a load of change I had kicking about in jars and I've got over ยฃ42 to send already ๐Ÿ’™

Just wanted to check in as I've been pretty much offline for a while. Had some bad family news and I've been in an awful place mentally and everything just got too much and I did the usual 'hide from everything and hope it goes away' when actually what happens is it all gets worse!

I've hidden from work and all my other commitments, ignored messages from friends and customers as I've been too anxious, depressed and stressed to deal with it, and generally been a useless mess. Of course doing that makes everything 10 times worse and makes me 10 times more anxious until I deal with it. So today I've put on my big girl pants and started sorting my shit out. Hiding is not the answer. I'm not afraid to admit that I deal with things badly, it's an important step in correcting it.

Touch Box Theatres performance research is currently based on ME research and issues surrounding the illness with the patients, parents and partners who suffer with them due to the many subhuman standards they face from the 'medical professionals', workplace and society. The current guidelines from NICE to do with ME are abhorrent and fall far beyond the quality of care ME suffers require and should be granted. The PACE Trial is a disaster and ME suffers and their families alike should be protected and given far far more support and quality of care than what is currently provided.

I've signed this to join the people who already have signed alongside compelling everyone else I know (THAT MEANS YOU) to do so with us, in the hope that this will bring the provision ME suffers deserve.

https://www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision?recruiter=252000821&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=autopublish
#touchboxtheatre #investinme #meisreal #meresearch #medicalworld #niceguidelines #pacetrial #change #makethedifference

Dอ›Iอ›Aอ› Dอ›Eอ› Lอ›Lอ›Uอ›Vอ›Iอ›Aอ› y nosotras lo disfrutamos asรญ ๐ŸŒง๐Ÿ‘ฉ๐Ÿปโ€๐Ÿ’ป๐Ÿ‘ฉ๐Ÿฝโ€๐Ÿ’ปโ˜•๏ธ #MEresearch

Exploring some of last years Invest in M.E. Research material before this years arrives in the post #meresearch #mastersdegree #touchboxtheatre #theatre #meisreal #investinmeconferencedvd #important

Camden Town is giving me motivation!! Please support me in my marathon to raise funds for the #meresearch! Link in bio ๐Ÿ‘†๐Ÿฝ๐Ÿ‘†๐Ÿฝ๐Ÿ‘†๐Ÿฝ

Tusen tusen takk igjen til @kavlifondet for denne fantastiske og vedvarende stรธtten til forskningen pรฅ ME ved Haukeland Universitetssykehus ! Nye 4.9 millioner er tildelt. - Med hjelp av disse midlene kan vi bygge ut biobanken og fรธre videre balasforskningen pรฅ sykdomsmekanismer i samarbeide med Karl Johan Tronstad sin forskningsgruppe ved Universitetet i Bergen, sier Olav Mella #millionsmissing #millionsmissingnorway #meforskning #meresearch #mecfs #MEHjerteForMe

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