View allAll Photos Tagged MillionsMissing
Another of the demonstrations I saw as I walked down Whitehall. This protest called Millions Missing was a virtual protest outside the Department of Health in Whitehall. It was a representation of the millions of ME (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) sufferers missing from their careers, education, social lives and families due to the debilitating symptoms of the disease.
The protests were internationally coordinated taking place in America, Canada and Australia. It was called 'virtual' because those who could not make it were asked to send a pair of their shoes to represent them. Each pair of shoes was labelled with the individual's name and what they were missing because of their condition.
May 25th, 2016 marks the “Millions Missing” global day of protest for Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) patients.
The demonstration hopes to bring awareness to the URGENT need for increased clinical research funding, medical education, and effective treatment for people with ME/CFS.
To learn more, please click on this link: www.meaction.net
#MillionsMissing
#MEAction
Le Bambole Mk. V, The Colorpack Pinhole Camera. Fujifilm FP-100B film.
I remember what she used to be like. I remember the vigour and her passion for life. Alas, I have seen what ME/CFS does to a person. Give her life back, I plead. "Nothing can be done", they say. And so my humble contribution to #millionsmissing last year; A pair of shoes and the reflection of a memory.
To my wife i dedicate this poem:
"On the surface she smiles,
Its nothing but a masquerade,
To veil her true feelings in a shroud of dismay,
Because the surface is crumbling,
No one see her hurting,
All we see is the glimmering reflections of what was,
Off the broken shards that she was made up of
Broken pieces are scattered everywhere,
A life of imprisonment within herself,
An inhumane fate."
London, UK, 25th May, 2016, Millions Missing protester outside the department of Health, Whitehall London
Another of the demonstrations I saw as I walked down Whitehall. This protest called 'Millions Missing' was a virtual protest outside the Department of Health in Whitehall. It was a representation of the Millions of ME (Myalgic Encephalomyelitis) And CFS (Chronic Fatigue Syndrome) sufferers missing from their careers, education, social lives and families due to the debilitating symptoms of the disease.
The protests were internationally coordinated taking place in America, Australia and Canada. It was called 'virtual' because those who could not make it were asked to send a pair of shoes to represent them. Each pair of shoes was labelled with the individual's name and what they were because of their condition.
© Sarah Allegra
"Know thyself, know thy enemy. A thousand battles, a thousand victories."
-- Sun Tzu, The Art of War
Another May 12th come and gone. Another year of fighting the civil war inside my body while trying to maintain something that resembles a life. Another year trying wrest each day back from the hands of the enemy, ME, and trying to make people aware that it exists.
May 12th is International ME/CFS Awareness Day. As many of you who follow my work know, I was first touched by ME on May 27th of 2008, just about 11 years ago. I have not had a day where I felt good, or a pain-free day since then. I have not not felt exhausted in all that time. Like an invading horde, it has sunk its roots deep into my cells and I don't know if I will ever fully be rid of it. I am tired. And tired of being tired. Tired of being in pain. Tired of enduring treatments which often seem to do more harm than good. But most of all right now, I'm tired of feeling like a victim.
When I first started thinking about what I'd like to do for my annual ME-themed photos, my concepts weren't great. They were as tired as I was. I spoke to Geoff about it, who suggested going in an entirely different direction. Instead of trying to portray how ME physically feels, try to portray how I feel about ME. And I have some very strong feelings about it. It doesn't feel like a cerebral, emotionless disease, it feels like a malicious invader, inexorably taking over my body no matter how fervently I fight against it. It feels deliberate in the things it takes away from me, the passions it forces me to give up, the delights I cannot even pick up, the joys it smacks from my hands. It is so personal, so vindictive, it truly feels like a sentient being.
I am tired. But I am more tired of it than anything else. Of having to submit to its whims and rules. Of fearing its wrath if I overdo it in the most basic of ways. Of being forced to live in obedience to a mad, evil tyrant.
I want to fight it, physically if possible. I can fantasize about wrapping my hands around its throat and squeezing until there's nothing left of it. I am so, so tired, but I will keep fighting it. It's all I have left to do. And each day I make the choice to get out of bed, to continue living in my mutinous body is a victory for me. It's a battle won, not the war yet, but just maybe, someday, all these battles will stack up and turn into that greatest win.
Until then, I will keep fighting. Bloody, battered, frequently finding myself at the end of my strength, I keep going. I cannot let this monster win. This year, I am declaring war on the ME. And while I might not seem like the most fearful foe, I can promise you that it should be afraid. I have strength in reserves that I didn't know I had.
As I thought about what to call this set of images (there will be three total when they're all done), The Art of War came to mind and it felt perfect. Though I might not beat the ME through pure force, I can outfox it. While ME's awareness ribbon color is a deep blue, I wanted to show blue's opposite, orange, in important details. The courage-building Norse runes written on my face are painted with orange, as are my eyes; the windows to the soul. I wanted to show that in my deepest depths, I am *me*, I am not ME. And that is as valid, if not more, than any physical fight, to Sun Tzu. Please join me in spreading awareness of ME/CFS and fibromyalgia by sharing these coming images and the following hashtags. Every mind opened is another friend, another supporter, another person who will speak up for the research and funding that we need and deserve.
This is not about a disease which is merely uncomfortable and unfun. This fight is often fatal. Sometimes by complications, sometimes by the ME directly, and sometimes by forcing its victim through so much suffering, they choose to end the pain themselves. The stakes don't get higher. Yet we get some of the lowest funding of any disease; an amount similar to what hayfever research is granted. Less than a quarter of what male pattern baldness receives. We suffer, burn and die while politicians fiddle and work rooms. A few valiant researches continue the quest anyway, but they can't do it on their own any more than I can. We all need help. But first, people need to know there's a problem. Please help me spread the word. There is no time to spare.
I'll see you on the battle field.
#May12th, #MillionsMissing, #MEawarenessDay, #MEAction, #MyalgicE
*Personal Instagram: instagram.com/artosthebear
* Professional Instagram: www.instagram.com/sarahallegraartistry/
*Blog: sarahallegra.wordpress.com
*Twitter: twitter.com/sarahallegra
*Facebook: www.facebook.com/artosthebear
*Red Bubble - including prints: www.redbubble.com/people/sarahallegra
*Sarah Allegra Artistry: sarahallegra.com/
Between 2005 and 2007 I made a hundred large portrait paintings. Since then, less than two dozen.
Doing commercial art and then a day job took away my time, and #mecfs slowly took the ability to stand at the easel, to extend my arm, to hold the brush steady.
I haven't been well enough to do ANYTHING in my "spare time" for decades; when I could still hold a job, it took every molecule I had.
#mecfsawarenessday2023 #mecfsawareness #millionsmissinggermany #millionsmissing
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
#MEaction global event to raise awareness for CFS/ME (AKA - Chronic Fatigue Syndrome, AKA Myalgic Encephalomyelitis). It's rare to meet up with fellow sufferers, in the real world. The empty shoes (many more out of shot) are from those housebound or bed-bound, missing from life.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is to give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
Melbourne, Australia – 12 May 2018
#MillionsMissing is a global campaign demanding health equality for people suffering from Myalgic Encephalomyelitis (ME) or ME/CFS.
#MillionsMissing is dedicated to the millions of people missing from their careers, schools, social lives and families due to the debilitating symptoms of ME. At the same time, millions of dollars are missing from research, clinical education and healthcare funding that ME should be receiving.
The aim is give a voice to the estimated 240,000 Australians with ME, and to bring government attention to this debilitating illness. This includes funding for diagnostics testing, better health care, biomedical research, and access to support like the NDIS.
#MEaction global event to raise awareness of CFS/ME (Chronic Fatigue Syndrome, AKA Myalgic Encephalomyelitis). millionsmissing.meaction.net/
It's rare to meet up with fellow sufferers in the real world. The empty shoes (many more out of shot) are from those totally housebound or bed-bound, missing from life. At least 250'000 people in the UK suffer from this disease, yet there is no proven treatment available, nor significant research funding.
Local event organised by:
- Walsall Fibro and ME LINK: walsallfibroandmelink.org.uk
- Solihul & South Birmingham ME Support Group: www.ssb4mesupport.weebly.com
ME Awareness Week 2018 - Illuminating Theatre Severn in Shrewsbury - Very special thanks to Grant Wilson and Theatre Severn for hosting
#MEaction global event to raise awareness of CFS/ME (Chronic Fatigue Syndrome, AKA Myalgic Encephalomyelitis). millionsmissing.meaction.net/
It's rare to meet up with fellow sufferers in the real world. The empty shoes (many more out of shot) are from those totally housebound or bed-bound, missing from life. At least 250'000 people in the UK suffer from this disease, yet there is no proven treatment available, nor significant research funding.
Local event organised by:
- Walsall Fibro and ME LINK: walsallfibroandmelink.org.uk
- Solihul & South Birmingham ME Support Group: www.ssb4mesupport.weebly.com
#MEaction global event to raise awareness for CFS/ME (AKA - Chronic Fatigue Syndrome, AKA Myalgic Encephalomyelitis). It's rare to meet up with fellow sufferers, in the real world. The empty shoes (many more out of shot) are from those housebound or bed-bound, missing from life.
A great slogan ! It was hard to smile for the camera as most of the time I just felt immensely sad and tearful. Sadly I know there are so many other diseases and ills in society for which solutions and funding are desperately needed. But at least this event allowed people with ME the opportunity to be seen and heard, and to share with each other the distress they experience, which has got to be better than isolation and ignoring.
ME Awareness Week 2018 - Illuminating Theatre Severn in Shrewsbury - Very special thanks to Grant Wilson and Theatre Severn for hosting
📢Wir brauchen eure Unterstützung bei unserem Projekt #MillionsMissingDoodle!
Wäre es nicht großartig, wenn #MillionsMissing am 12. Mai ein eigenes GoogleDoodle bekäme?✊
Was ihr machen müsst?
📧Schreibt eine kurze aber aussagekräftige E-mail an: proposals@google.com
👉Weitere Informationen: www.google.com/doodles/about
❓Was ist dieses „Doodle“ überhaupt?
www.google.com/doodles/florence-nightingales-birthday
GoogleDoodle muss von #MillionsMissing Leuten überflutet werden!
>> Wer Schwierigkeiten hat einen Text zu formulieren, den möchten wir gerne unterstützen:<<
Liebes Doodle Team Deutschland,
gerne möchte ich für den 12. Mai 2018 das Thema #millionsmissing (www.millionsmissing.org / www.millionsmissingdeutschland.de) vorschlagen.
Ich bin an ME/cfs (Myalgische Enzephalomyelitis/ Chronic Fatigue Syndrome ) erkrankt und erfahre keinerlei Unterstützung. Weder durch das Gesundheitssytem , meiner Krankenkassen, Krankenhäuser und Ärzte, noch durch Forschung!
Wir versenden dieses Jahr unsere Schuhe und unsere Botschaften unter dem Motto #CanYouSeeMe an MillionsMissing Deutschland um am 12.05 in Berlin für die gesundheitliche Gleichstellung von ME zu protestieren.
Vielen Dank für eure Unterstützung
kontakt@millionsmissing.de
Halten „alte“ Muskeln Menschen im ME/CFS-Sumpf gefangen? Außerdem: Tompkins Team verspricht neue Einblicke | Im Original von Cort Johnson | 07 Nov 2018.
„Die Autoren glauben, dass die Muskelprobleme, die in ME/CFS gefunden werden, eher auf ein Altern hindeuten als auf alles andere.“
www.facebook.com/mmissinggermany/photos/a.197357779294029...
Are “Old” Muscles Holding People with Chronic Fatigue Syndrome (ME/CFS) Down? .
Plus Tompkins’ Team Promises New Insights.
by Cort Johnson | Nov 7, 2018 .
www.healthrising.org/blog/2018/11/07/muscles-old-chronic-....
ME Awareness Week 2018 - Illuminating Theatre Severn in Shrewsbury - Very special thanks to Grant Wilson and Theatre Severn for hosting
ME Awareness Week 2018 - Illuminating Theatre Severn in Shrewsbury - Very special thanks to Grant Wilson and Theatre Severn for hosting
Bayerischer Rundfunk | IQ - Wissenschaft und Forschung | 31.05.2019
»Möglicher Bluttest für Chronisches Fatigue Syndrom ME/CFS«
Von Yvonne Maier
bit.ly/BluttestMECFS
***
Die Wissenschaftsjournalistin Yvonne Maier hat heute den Artikel "Möglicher Bluttest für Chronisches Fatigue Syndrom ME/CFS" auf der Seite BR24 veröffentlicht.
»In Deutschland sind bis zu 300.000 Menschen an ME/CFS erkrankt - dem Chronischen Fatigue Syndrom. Viele von ihnen sind bettlägerig und die Krankheit ist schwer zu behandeln. In den USA wurde nun erstmals ein Bluttest entwickelt, der Hoffnungen macht.«
Zu Wort kommen die #MECFS-Betroffene Kathi Herr, die Leiterin der Immundefektambulanz der Charité - Universitätsmedizin Berlin Prof. Carmen Scheibenbogen, Prof. Ron Davis von der Stanford Medicine, sowie der Virologe Dr. Bhupesh Prusty von der Universität Würzburg.
"In Deutschland gibt es für ME/CFS kein Geld, keine Förderung. Es hat einfach keine Priorität." Dr. Bhupesh Prusty, Universität Würzburg
***
IQ - Wissenschaft und Forschung vom 08.05.2019 - 18:05 Uhr
ORIGINAL #MMD POST www.facebook.com/mmissinggermany/posts/2104234859874591
***
QUELLE
www.br.de/nachrichten/wissen/moeglicher-bluttest-fuer-chr...
***
Vom 5.-12. Mai machen wir weltweit auf ME aufmerksam und protestieren für die Gleichstellung von ME-Patienten in medizinischer und sozialer Versorgung. Wir laden euch ein mit dabei zu sein! Schnappt euch ein rotes T-Shirt, wappnet euch mit einem Protestposter und bringt Freunde, Familie und Verbündete mit. Lasst uns gemeinsam auf ME aufmerksam machen!
bit.ly/mmd1205
kontakt@millionsmissing.de
#MillionsMissing4Science
Myalgische Enzepahlomyeltis
Das serotonerge System
Neurotransmitter, wie serotoninerge Neuronen, die ihren Ursprung in den Raphe-Kernen haben, sind in der Lage, eine groÃe Anzahl von Teilen des Gehirns (siehe auch Limbisches System) zu kontrollieren, die für die ME-Symptomatik von Bedeutung ist.
***
Beispiele für ME-Symptome (unvollständig)
?? Beeinträchtigung der kognitiven Funktion (bewusste u. unterbewusste Vorgänge, wie Denken, Verstehen, Erinnerung, Wortfindung, Konzentration etc)
- Geruchssinn
- Dysautonomie, (autonome oder auch vegetative Nervensystem/ alle unwillkürlichen Prozesse, wie Verdauung, Herzschlag, etc.)
- Nebenniereninsuffizienz (Nebennierenschwäche, Cortisolmangel - Cortisol dient u. a. zur Stressbewältigung und der Regulations des Immunssystems)
- Lufthunger (das Gefühl nicht durchatmen zu können und zu wenig Sauerstoff zu bekommen)
- POTS (Posturales orthostatisches Tachykardiesyndrom/ beschleunigter Herzschlag)
- Bewegung
- Dopamin System/ dopaminerge System (Haltungsreflexe, die in verschiedenen Gebieten des Nervensystems koordiniert werden und notwendig sind, um dem Körper in aufrechter Haltung auszubalancieren,motorische Störungen, Verhalten)
- Kopfschmerzen
- Parasympathische Dysfunktion (vegetatives Nervensystem)
Der Parasympathikus ist im Allgemeinen für Erhaltung und Wiederherstellung zuständig; Verlangsamung des Pulses, Senkung des Blutdrucks, Stimulation des Darmtrakts, etc)
- Motoneuron Dysfunktion (Muskelschwund, Lähmung, Erschöpfung, Muskel- und Gelenkschmerzen, Muskelschwäche, etc.)
- Schmerz
***
Beispiele für Neurotransmitter
- Dopamin
- Noradrenalin, Adrenalin
- Serotonin (5-HT)
- Histamin
*
Aminosäuren, die als Botenstoffe dienen:
- Gaba (-Aminobuttersäure)
- Glycin
- Aspartat/ Glutamat
Neurotransmitter nehmen für die Wissenschaft einen immer gröÃer werdenden Stellenwert bei vielen Erkrankungen wie Multiple Sklerose, Morbus Parkinson, Alzheimer etc. ein.
***
MEHR INFORMATIONEN
Anatomie zentraler Neurotransmitter (NTM)-Systeme
teaching.thehumanbrain.info/neuroanatomie.php?kap=21
Funktionelle Neuroanatomie teaching.thehumanbrain.info/neuroanatomie
*
Anatomie des vegetativen Nervensystems (Sympathikus, Parasympathikus)
?? www.msdmanuals.com/de/heim/st%C3%B6rungen-der-hirn-,-r%C3...
***
#MillionsMissing #MillionsMissingDeutschland
#MyalgicE #MyalgicEncephalomyeltis #ME #MyalgischeEnzephalomyelitis#MEcfs
#MedEd #medtwitter #medinstagram #chronicillness #SickNotWeak
ME Awareness Week 2018 - Illuminating Theatre Severn in Shrewsbury - Very special thanks to Grant Wilson and Theatre Severn for hosting
Jens Spahn, wir müssen reden!
kontakt@millionsmissing.de
www.youtube.com/c/millionsmissingdeutschland
***
Fotograf: Jürgen Reinke - Herzlichen Dank!
***
#MillionsMissing4Poltics
JENS SPAHN, WIR MÜSSEN REDEN!
Das Bundesministerium für Bildung und Forschung? zitiert Anja Karliczek? auf Twitter: "70 Jahre Grundgesetz – das sind auch 70 Jahre Wissenschaftsfreiheit in Deutschland"
Doch was ist, wenn man eine schwere neuro-immunologische Multisystem-Erkrankung hat, die weder selten ist - noch Interesse in der Wissenschaft findet? Eine Krankheit, die den Ärzten unbekannt ist und lange Zeit missverstanden wurde?
Was ist, wenn es keine Therapien gibt, weil keine Anreize für Wissenschaftler geschaffen werden?
Was ist, wenn 240.000 schwer erkrankte Kinder und Erwachsene - mehr als MS- oder AIDS/HIV-Patienten - sich in Deutschland allein gelassen fühlen?
Dann sollte man reden! Jens Spahn?, wir müssen reden!
QUELLE
www.facebook.com/mmissinggermany/photos/a.197499583279849...
***
#MillionsMissing ist eine internationale Bewegung, die von der Non-Profit-Organisation #MEAction mit Sitz in Los Angeles 2016 ins Leben gerufen wurde, um weltweit auf die »Millions Missing« die Millionen Menschen, die an Myalgischer Enzephalomyelitis (ME) erkrankt sind und auf die Millionen fehlender Forschungsgelder aufmerksam zu machen.
Wir machen weltweit auf ME aufmerksam und protestieren für Forschung und Anerkennung, sowie die Gleichstellung von ME-Patienten in medizinischer und sozialer Versorgung.
bit.ly/mmd1205
kontakt@millionsmissing.de
#MillionsMissing4Media
ARTIKEL | Focus Online
»Es fing mit Halsschmerzen an - heute ist Karin Münster unheilbar krank« | 03.05.2019
Von Janina Schrupp
***
ORIGINAL #MMD POST | 03. Mai 2019 www.facebook.com/mmissinggermany/posts/2102477130050364
***
»Jede noch so kleine Tätigkeit wird an schlimmen Tagen zum Marathon, zum unbezwingbaren Kraftakt. Hinzu kommen die Schmerzen im ganzen Körper. Die 33-Jährige lebt nun seit etwa eineinhalb Jahren mit diesem Zustand – sie hat ME/CFS. Das steht für Myalgische Enzephalomyelitis (ME) und Chronic Fatigue Syndrom (CFS).« Focus Oline
Die FOCUS-Online-Autorin Janina Schrupp hat am 03.05.2019 den Artikel " Es fing mit Halsschmerzen an - heute ist Karin Münster unheilbar krank " veröffentlicht.
»Forscher der Aalborg University in Dänemark haben in einer Studie mehrere chronische Krankheiten miteinander verglichen und ordnen ME/CFS den Erkrankungen mit der niedrigsten Lebensqualität zu.« Focus Onlie
Sebastian Musch, Vorsitzender – Deutsche Gesellschaft Gesellschaft für ME/CFS – wir in dem Artikel mehrmals zitiert »Menschen mit einem leichten Krankheitsverlauf [verlieren] bereits 50 Prozent ihres vorherigen Leistungsniveaus. Ihre täglichen Energieressourcen sind meistens nach dem Aufstehen, Zähneputzen und Frühstücken verbraucht.«
In dem Artikel wird ebenfalls darüber gesprochen, dass ME/CFS für die meisten Menschen keine Zukunftspläne zulässt – viel mehr noch – es fühle sich an, als wäre die eigene Persönlichkeit durch die Erkrankung verloren gegangen. Viele der Betroffenen sind zuvor sehr aktiv gewesen und müssen nun mit den zwangsauferlegten Grenzen zu leben lernen.
***
Focus Online | Deutsche Gesellschaft
***
?QUELLE
Focus Online | Janina Schrupp
Chronisches Erschöpfungssyndrom | Es fing mit Halsschmerzen an - heute ist Karin Münster unheilbar krank
www.focus.de/gesundheit/ratgeber/gelenkschmerzen/es-fing-...
***
bit.ly/mmd1205
kontakt@millionsmissing.de
***
#MillionsMissing #MyalgischeEnzephalomyelitis #MECFS #Wissenschaft #Medien
Jens Spahn, wir müssen reden!
kontakt@millionsmissing.de
www.youtube.com/c/millionsmissingdeutschland
***
Fotograf: Jürgen Reinke - Herzlichen Dank!
***
#MillionsMissing4Poltics
JENS SPAHN, WIR MÜSSEN REDEN!
Das Bundesministerium für Bildung und Forschung? zitiert Anja Karliczek? auf Twitter: "70 Jahre Grundgesetz – das sind auch 70 Jahre Wissenschaftsfreiheit in Deutschland"
Doch was ist, wenn man eine schwere neuro-immunologische Multisystem-Erkrankung hat, die weder selten ist - noch Interesse in der Wissenschaft findet? Eine Krankheit, die den Ärzten unbekannt ist und lange Zeit missverstanden wurde?
Was ist, wenn es keine Therapien gibt, weil keine Anreize für Wissenschaftler geschaffen werden?
Was ist, wenn 240.000 schwer erkrankte Kinder und Erwachsene - mehr als MS- oder AIDS/HIV-Patienten - sich in Deutschland allein gelassen fühlen?
Dann sollte man reden! Jens Spahn?, wir müssen reden!
QUELLE
www.facebook.com/mmissinggermany/photos/a.197499583279849...
***
#MillionsMissing ist eine internationale Bewegung, die von der Non-Profit-Organisation #MEAction mit Sitz in Los Angeles 2016 ins Leben gerufen wurde, um weltweit auf die »Millions Missing« die Millionen Menschen, die an Myalgischer Enzephalomyelitis (ME) erkrankt sind und auf die Millionen fehlender Forschungsgelder aufmerksam zu machen.
Wir machen weltweit auf ME aufmerksam und protestieren für Forschung und Anerkennung, sowie die Gleichstellung von ME-Patienten in medizinischer und sozialer Versorgung.
bit.ly/mmd1205
kontakt@millionsmissing.de
Jens Spahn, wir müssen reden!
kontakt@millionsmissing.de
www.youtube.com/c/millionsmissingdeutschland
***
Fotograf: Jürgen Reinke - Herzlichen Dank!
***
#MillionsMissing4Poltics
JENS SPAHN, WIR MÜSSEN REDEN!
Das Bundesministerium für Bildung und Forschung? zitiert Anja Karliczek? auf Twitter: "70 Jahre Grundgesetz – das sind auch 70 Jahre Wissenschaftsfreiheit in Deutschland"
Doch was ist, wenn man eine schwere neuro-immunologische Multisystem-Erkrankung hat, die weder selten ist - noch Interesse in der Wissenschaft findet? Eine Krankheit, die den Ärzten unbekannt ist und lange Zeit missverstanden wurde?
Was ist, wenn es keine Therapien gibt, weil keine Anreize für Wissenschaftler geschaffen werden?
Was ist, wenn 240.000 schwer erkrankte Kinder und Erwachsene - mehr als MS- oder AIDS/HIV-Patienten - sich in Deutschland allein gelassen fühlen?
Dann sollte man reden! Jens Spahn?, wir müssen reden!
QUELLE
www.facebook.com/mmissinggermany/photos/a.197499583279849...
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#MillionsMissing ist eine internationale Bewegung, die von der Non-Profit-Organisation #MEAction mit Sitz in Los Angeles 2016 ins Leben gerufen wurde, um weltweit auf die »Millions Missing« die Millionen Menschen, die an Myalgischer Enzephalomyelitis (ME) erkrankt sind und auf die Millionen fehlender Forschungsgelder aufmerksam zu machen.
Wir machen weltweit auf ME aufmerksam und protestieren für Forschung und Anerkennung, sowie die Gleichstellung von ME-Patienten in medizinischer und sozialer Versorgung.
bit.ly/mmd1205
kontakt@millionsmissing.de
Vom 5.-12. Mai machen wir weltweit auf ME aufmerksam und protestieren für die Gleichstellung von ME-Patienten in medizinischer und sozialer Versorgung. Wir laden euch ein mit dabei zu sein! Schnappt euch ein rotes T-Shirt, wappnet euch mit einem Protestposter und bringt Freunde, Familie und Verbündete mit. Lasst uns gemeinsam auf ME aufmerksam machen!
bit.ly/mmd1205
kontakt@millionsmissing.de