A Swiss National Strategy for Long COVID and ME/CFS Patients

Comments

#1402

I have ME and it is destroying my life. No job, no treatment, no medical knowledge from the health professionals. I need help and hope to continue living.

Sharon Taylor (Harlow, 2021-04-02)

#1408

The scientific evidence for ME/CFS is established and Schweiz health authorities should follow the CDC, NIH and NICE guidelines for ME/CFS.
https://www.tandfonline.com/doi/full/10.1080/21641846.2020.1778227

cathrine engsig (copenhagen, 2021-04-02)

#1411

Je signe également pour avoir alerté les pouvoirs publics sur la condition des Covid Long, autrement nommés Neurocovid, avant l'alerte donnée par l'OMS.

Iris HÄNNI (Gordes, 2021-04-02)

#1416

Je signe parce que les patients atteints de cette maladie grave l'EM/SFC doivent être soutenus, reconnus et aidés.

Sarah BRIERE (Bar le Duc, 2021-04-02)

#1418

Because I have been sick with ME for 25 years and bed bound for 5. So little is being done and we desperately want help to get better

Jeffery Smith (Toronto , 2021-04-02)

#1421

I have M.E

Julie Robert (Nairn, 2021-04-02)

#1431

Please find the cause and a cure so we can have our lives back!

John Brondyke (Hermosa Beach, 2021-04-03)

#1433

I'm self- affected

Thomas Heinzmann (Wüstenrot, 2021-04-03)

#1434

I believe ME and long covid patients should receive the medical recognition they deserve.

Geoffrey Moore (Hamilton, 2021-04-03)

#1437

Sohn erkrankt an ME /CFS

Madeleine Odermatt (Stans, 2021-04-03)

#1438

Sohn an ME / CFS erkrankt

Werner Odermatt (Stans, 2021-04-03)

#1445

I have ME and have struggled for 26 years.

Vivien Pomfrey (Launceston, 2021-04-03)

#1447

I suffer since 2011 on CFS, Fibromyalgie and in the meantime also on MCAS after I had an intoxication with Mercury (amalgam removal), immundeficency, reactivation EBV and toxic encephalopathy!

Sabine Botzler (Larnaka, 2021-04-03)

#1451

Es wichtig und dringend an der Zeit ist.

Sabine Krass (Öhringen , 2021-04-03)

#1465

j'ai cfs.

Maureen Mingneau (Eeklo, 2021-04-03)

#1469

I have cfs.

Martina Pa (Singen , 2021-04-03)

#1470

Weil ich Menschen mit ME/ CFS kenne die nicht angemessen behandelt wurden.

Corinne Wider (Männedorf, 2021-04-03)

#1473

Ma fille en est victime

Sandra Monachon (Froideville, 2021-04-03)

#1474

I have Post covid symptome

Tina F. (Vörstetten , 2021-04-03)

#1475

I suffer from Fibromyalgia that is also ignored and not treated correctly.

Kelly Wood (London , 2021-04-03)

#1476

Onderzoek is zeer belangrijk, en hard nodig. De ziekte is erg verwoestend en dramatisch. Onderzoek brengt hoop en erkenning en misschien een beter leven.

Nathalie Blankendaal (Doetinchem , 2021-04-03)

#1478

I am an ME Advocate and carer of my 27yr old son, who has suffered from ME for over 7yrs.

Edna MacNamara (Galway, 2021-04-03)

#1479

ich erstens selbst betroffen bin und ich zweitens gerade deshalb weiß, was es bedeutet, mit solch einer Erkrankung praktisch ohne Behandlung zu leben.

Christine Erben (Jena, 2021-04-03)

#1485

Mon enfant est sûrement atteint de ce symptôme.

Claudio Freda (Peney-le-Jorat , 2021-04-04)

#1487

My sister has been bedbound with ME for over 25 years .

Roisin Elliott (BELFAST, 2021-04-04)

#1488

I have mecfs and because its so underdiagnosed, I became severely disabled within 2 years. I was an elite sports therapist, graded exercise therapy took away my available hours on my feet. It took my career, mobility, relationships and future prospects of a family. #StopTheHarm #EndTheStigma #FundTheResearch #FindTheTreatments #giftusourlivesback #MillionsMissing #ChangeTheFuture4ME

Trisha Price (Bristol, 2021-04-04)

#1489

Science does not make enough effort to understand this underestimated illness

Karsten Busse (Seeheim-Jugenheim, 2021-04-04)

#1490

I am a long haul covid patient with the symptoms of me/cfs.

Jen Mayberry (Chicago, 2021-04-04)

#1491

Ich selbst betroffen bin

Sandra Mohr (Warstein , 2021-04-04)

#1493

Wir Erkrankten benötigen sehr dringend Hilfe und Unterstützung.

Susanne Hausner (Donzdorf , 2021-04-04)

#1495

Everybody with a desease should have a moral human right to be treated seriuosly.

Karin Hansen (Copenhagen, 2021-04-04)

#1502

I suffer from CFS/ME

Ann Bosshard (Bremgarten bei Bern, 2021-04-04)

#1512

Physician-scientist with expertise in ME/CFS and Long Covid; also am Long Covid patient x 1 year, affording additional insights into the potential scope and pathogenesis of disease. Critical to avoid treatments that might exacerbate Long Covid status or ME/CFS, such as graded exercise therapy; to not ignore concerns such as coagulation/stroke risk, that may be specific to Long Covid; and to provide a means for disseminating new findings regarding optimal workup and treatment to all physicians throughout your country and across the world. It is essential to do what is possible to prevent increasing disability, both short- and long-term.

Mady Hornig, MA, MD (New York, 2021-04-05)

#1513

I have had this illness for 27 years and have tried everything I know to get well. We need help and it’s beyond me why we cannot get help.

Marilyn Wallman (Wokingham, 2021-04-05)

#1516

Ich unterschreibe weil ich selbst betroffen bin und ich bin überhaupt nicht fit. Dazu konnte die Sprechstunde long covid Symptome nicht weiterhelfen. Es hiesse immer ja Sie haben es aber leider wissen wir nicht was machen.nur abwarten.

Beatrice Ott (Lenzburg , 2021-04-05)

#1518

Ich unterschreibe, weil meine Mutter an CFS erkrankt ist.

Bianca Zanolari (Chur, 2021-04-05)

#1519

I'm signing because there is so much disruption to a suffers live and their families and friends. Their needs to be more research into finding a cure or at least an effective drug to manage ME.

Bridget Levingston (Swindon, 2021-04-05)

#1523

I have a friend who is a long term sufferer of ME.

Wendy Owen (Reading, 2021-04-05)

#1524

Ich unterschreibe, weil ein Teil meiner Familie im Norden Europas wohnt, wo Menschen mit denselben Symptomen vom Staat anerkannt und unterstützt werden und nicht noch zusätzlich psychisch belastet sind, weil die Krankheit einfach als nichts abgetan wird wie hier in der Schweiz.

Mario Giger (9215 Buhwil, 2021-04-05)

#1526

Ich unterschreibe weil ich als Therapeutin viele Patienten sehe und habe die zwischen die Stühle fallen.

Renate Zbinden (Steffisburg, 2021-04-05)

#1531

Ich könnte betroffen sein!

Jennifer Fattorini (Uttigen, 2021-04-05)

#1536

I am a long standing M.E sufferer diagnosed 2001 . We need help .

Kj Raleigh (Clwyd, 2021-04-05)

#1537

I've been suffering ME since my early thirties and am now 60. It started after a virus in September 1993.

Diane Louise (Blackburn , 2021-04-05)

#1538

I have ME and support further funding and research into ME and long Covid

Joanna Strickland (Pershore, 2021-04-05)

#1542

It’s about time that us CFS patients wasn’t medically abused and gas lighted .
People with CFS are made sicker by exercise including even minor activities beyond their individual limits such as being upright and even thinking.
Having CFS is hell, but having CFS and being treated unfairly or inappropriately by friends and family and being medically abused by our doctors is beyond description.

Stacey Golding (Lichfield , 2021-04-06)

#1543

I have been suffering from ME/CFS for years & feel we have been abandoned by the medical system. I have heard a lot of people with long covid discuss their symptoms & they are exactly the same as mine!! We need specialised clinics so badly.

Irene O'Shea (Maynooth , 2021-04-06)

#1546

Ein früherer Arbeitskollege leidet an ME/CFS und wird durch die IV 'ignoriert'!

Daniel Hefti (Niederscherli, 2021-04-06)

#1547

Ich unterschreibe, weil ich selber seit 23 Jahren von einer CFS/ ME Erkrankung betroffen bin und deshalb nicht mehr arbeiten kann.

Monica Düblin (Zürich, 2021-04-06)

#1554

My daughter, now nearly 37, has had me/cfs since she was 14, following EBV. My sister was diagnosed in her 60's, following a series of traumas. No treatment on the NHS.

Helen Milstein (London, 2021-04-07)

#1555

Ich kenne eine junge Frau , die sehr anCFS leidet . In der Sendung Puls im SRF habe ich gesehen , dass Long Covid gleiche Folgen hat .

Brigitte Nigg (Hosenruck, 2021-04-07)

#1561

Ich unterschreibe, weil ich selbst von ME-CFS betroffen bin.

Christian Burgener (Pieterlen, 2021-04-07)

#1562

Ich unterschreibe weil ich mir Gerechtigkeit und endlich Gehör für die Betroffenen wünsche!

Doris Niggli (Belp, 2021-04-07)

#1564

Ich selber Long Covid habe. Habe mich vermutlich im April 2020 angesteckt. Leider kann ich es nicht beweisen, weil man zu der Zeit keinen Zugang zu Tests hatte.

Shila Schneider (Zürich , 2021-04-07)

#1566

I am an ME patient, missing from my life for 7 years.

Tracy Meggitt (Rotherham, 2021-04-07)

#1568

Ich bin selber seit 39 Jahren von CFS betroffen (unterdessen pensioniert).

Franziska Moser (2553 Safnern, 2021-04-08)

#1569

I'm signing in, because even Mr. Aymo Brunetti, an economist within the Swiss #Covid Task Force, recently admitted, that the TF did not know anything about the effects of #LongCovid on our Swiss economy. Well, what applies to its health effects then?!

Jeannette Wibmer (Uhwiesen, 2021-04-08)

#1570

ME/CFS patients have been neglected for a long time, the same shouldn't happen to those with Long Covid. The time has come to for this neglect to end.

Andrew Devereux-Cooke (Andover, 2021-04-08)

#1576

...weil ich selbst an CFS erkrankt bin und daher miterlebe wie wichtig Forschung, Behandlungsmöglichkeiten und IV-Beiträge für Betroffene wären!

Corinne Gisi (Uster, 2021-04-08)

#1580

I’ve been suffering with ME/CFS for over 20 years and the understanding and support that’s desperately needed by myself and others is still, two decades later, sorely lacking. We’re prodded, poked and tested ad infinitum, then ridiculed and told we’re hypochondriacs because nothing shows up, and yet we went from being high-functioning, self-sufficient adults to needing ongoing care and support like children, often for decades afterwards. There’s clearly a gap in mainstream thinking and it is my greatest hope that this will change soon. Obviously that’s a tall order when ‘medical’ understanding is based on Newtonian physics and humans - and life - operate according to Quantum physics, but I remain ever hopeful. Thank you

Ellie Ros (Chamonix, 2021-04-08)

#1584

Il normal d'aider les malades non pris en charge pour des pathologies graves et de leur donner un meilleur cadre de vie ce qui commence par les reconnaîtrent invalides et leur donner des moyens d'existence

Bruno Chavan (Sévery, 2021-04-09)

#1588

Ich habe einen guten Freund der CFS hat. Mir war das lange nicht bekannt welche Einwirkungen die Krankheit haben kann, eine öffentliche Annerkennung wuerde vielleicht Leuten wie ihm helfen. Ich denke auch bei Long-Cov wird unterschätzt wie stark die Beeinträchtigung sein kann, und meist abgetan.

Jana Moeller (Allschwil, 2021-04-09)

#1590

Weil ich selbst seit 5 Jahren am Cfs erkrankt bin.

Chiara Zaugg (Thun, 2021-04-09)

#1594

Unsere Tochter hat CFS. Leute mit dieser schwierigen Krankheit sollten unbedingt unterstützt werden.

Christine Weber (Oberkulm, 2021-04-09)

#1596

Je suis souffre d’une ancéphalomyélite myalgique depuis 8 ans, je sais quelle horreur c’est au quotidien. J’imagine donc très bien les séquelles pouvant persister suite au covid. Il est essentiel que les médecins et politiciens sachent ce que c’est et puissent reconnaître, agir, réagir par rapport à cela.

Caroline Pittier (Daillens, 2021-04-09)

#1600

Par solidarité avec les patients atteints de COVID long ou syndrome post-COVID-19.
Et personnellement concernée depuis plusieurs années par le syndrome ME/CFS / obtenu aucune prestation AI

Martine Clottu (Maracon, 2021-04-09)