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Another victim of M.E. that has taken her own life because the every day struggle was too painful to deal with. You fought so hard for us M.E. sufferers Anne I just hope one day money will be spent on researching this prison we live in every day. Rest easy now sweet girl....Anne Örtegren 💖

Her goodbye letter... http://lobel.nu/anne.html

#myalgicencephalomyelitis #chronicfatigue #chronicfatiguesyndrome #chronicpain #chronicillness #meresearch #millionsmissing #invisibleillness

Great article published on December 24th regarding the exciting #mecfs research findings from Australia this year in terms of calcium. The site does require you to sign up to read but please Scroll left ➡️ to read screenshots, I’ll pop a temporary live link in my bio 🔝and here it is for reference too : http://www.couriermail.com.au/technology/science/australian-scientist-prove-chronic-fatigue-syndrome-is-real-and-have-discovered-a-test-for-it/news-story/2f62ddcf2d5a625b0c1f185fc649bbf0 🔹#mecfsresearch 🔹#meresearch

“This is not what I envisioned for my life. I want to be normal.” @solve_cfs #mecfs #MEadvocacy #meresearch #missingmillions #MEawareness #missingbutnolongersilent #iwantmylifeback

A breakthrough is coming... 💙
#Repost @myillnessmythoughts (@get_repost)
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You guys know me & know I wasn’t about to let this quote from Dr Jose Montoya MD in the Stanford Medicine article I posted earlier go by without making it into a quote we can all share!!! Please share for awareness 💙💪🏻👌🏻 #MEresearch #MEadvocacy #MEawareness #MECFS Quote from : http://scopeblog.stanford.edu/2017/11/08/demystifying-chronic-fatigue-syndrome/

#mecfs #chronicillness #invisibleillness #spoonie #warrior #fighter #pots #fibro #invisibledisability #autoimmune #lyme #sensoryoverload #butyoudontlooksick #stanford #millionsmissing #chronicfatigue #medicalmystery #healtheworld #wishing #dontletgo #hope #health

#Repost @myillnessmythoughts (@get_repost)
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You guys know me & know I wasn’t about to let this quote from Dr Jose Montoya MD in the Stanford Medicine article I posted earlier go by without making it into a quote we can all share!!! Please share for awareness 💙💪🏻👌🏻 #MEresearch #MEadvocacy #MEawareness #MECFS Quote from : http://scopeblog.stanford.edu/2017/11/08/demystifying-chronic-fatigue-syndrome/

You guys know me & know I wasn’t about to let this quote from Dr Jose Montoya MD in the Stanford Medicine article I posted earlier go by without making it into a quote we can all share!!! Please share for awareness 💙💪🏻👌🏻 #MEresearch #MEadvocacy #MEawareness #MECFS Quote from : http://scopeblog.stanford.edu/2017/11/08/demystifying-chronic-fatigue-syndrome/

Fantastic article in Stanford Medicine by Ruthann Richter covering the very exciting #mecfs study that was published in the summer by Dr Jose Montoya showing clear inflammatory markers in people with ME/CFS. “THESE PATIENTS ARE NOT CRAZY. OUR FINDINGS VALIDATE THEIR SYMPTOMS-THAT THEIR ILLNESS IS REAL AND HAS A BIOLOGICAL BASIS. NOW THAT WE KNOW THAT THIS IS REAL, INGRAINED IN THE BIOLOGY OF THE BODY AND THE IMMUNE SYSTEM THAT EXPLAINS WHY THESE PATIENTS ARE SO SICK, WE COULD END UP WITH A BLOOD TEST, BUT EQUALLY OR MORE EXCITING, NOW WE CAN FIND DRUGS TO CONQUER THE DISEASE.’ - Dr Jose Montoya #MEresearch I’ll pop the live link in my bio today but as I often post new article links I’ll put it here too: http://scopeblog.stanford.edu/2017/11/08/demystifying-chronic-fatigue-syndrome/

More exciting news to wake up too! Article from Science Alert covering the excellent research published by @newcastleuni a few days ago showing differences of cellular function in #mecfs patients. I’ve taken screenshots of it all for you to scroll through & highlighted the most important parts to try & make it easier & will pop the live link in my bio for you all 💙 #MEresearch #MEadvocacy As I post new articles with their links as soon as I see them (so the live link in my bio often changes) I’ll put the link here too: http://www.sciencealert.com/chronic-fatigue-syndrome-low-energy-production-in-cells-metabolic-disease

New #mecfs research happening in Australia 🇦🇺 Here’s a couple of screenshots and the link to the main articles I’ll be in my bio ⬆️⬆️⬆️⬆️⬆️ #MEresearch #MEadvocacy

A very honest, truthful & painfully relatable quote on ‘life’ with #mecfs It comes from an article from ‘Hack’ who interviewed Andrew Bretherton, a 26yr Old #mesufferer I’ll pop the link to the article in my bio 👆🏻 #meresearch #meadvocacy #severeME #wejustwanttolive #tiredofbeingsodamsick247 #meaction

Guys BIG NEWS!! The UNREST movie is now available to pre-order on iTunes 👏🏻👏🏻👏🏻👏🏻So if you can’t make it to a screening or there isn’t one near to you this is a great way of being able to see this monumental movie! As @jen.brea states in her latest Facebook video (go follow her page ‘Unrest movie’ 👌🏻) the more people who pre-order this movie, the higher it will rank on the charts & make more of an impact & MAKE US HEARD! Show that we can’t be ignored any longer! 💙 I’ll pop a direct link to the iTunes Store in my bio 💙 Let’s challenge the way the world unfairly sees us 💪🏻 #unrestmovie #meadvocacy #meresearch #mecfs

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 💙#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. 💙#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 £42 to send already 💙

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

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