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Spon­tane­ity and human­i­ty are the spells of death for ME/CFS patients. We must become robots or we with­er and die.

Whit­ney Dafoe

About ME/CFS

Myal­gic encephalomyelitis/chronic fatigue syn­drome (ME/CFS) is a mul­ti­sys­tem dis­ease with a com­plex, most­ly per­ma­nent pathol­o­gy, and a high num­ber of those affect­ed [1] [2]. 

The ill­ness has dif­fer­ent lev­els of sever­i­ty, and often leads to a high degree of phys­i­cal dis­abil­i­ty, cog­ni­tive impair­ment, and low­ered qual­i­ty of life. In it’s sever­est form, those affect­ed are often com­plete­ly iso­lat­ed from any stim­uli or exter­nal impres­sions, and are com­plete­ly ignored by soci­ety and research [3]. The WHO has clas­si­fied ME/CFS as a neu­ro­log­i­cal con­di­tion since 1969 [4] [5]. 

The Aus­tri­an soci­ety for ME/CFS report describes the char­ac­ter­is­tics of the dis­ease as “‘all-encom­pass­ing’ phys­i­cal and men­tal fatigue and weak­ness that is not relieved by rest. […] Anoth­er major symp­tom is post-exer­tion­al malaise (PEM) after phys­i­cal or men­tal exer­tion, which can last for days or even sev­er­al weeks. Even sim­ple every­day activ­i­ties may be dif­fi­cult and lead to wors­en­ing of symp­toms [1] [6] [7] [8]”. Those most severe­ly affect­ed may expe­ri­ence this from speak­ing, eat­ing, or just by being around anoth­er per­son in the same room [9]. 

Oth­er symp­toms include pro­nounced pain, neu­rocog­ni­tive dis­or­ders, dysautonomia/POTS, neu­ropathies, great­ly increased sen­si­tiv­i­ty to stim­uli, and immune sys­tem dis­or­ders with flu-like symp­toms [10] [11].  

Because ME/CFS is often trig­gered by an infec­tion, it is cur­rent­ly being dis­cussed and research in con­nec­tion with chronic/long Covid, and as a long-term con­se­quence of Covid [12] [13]. 

Both ill­ness­es often share sim­i­lar main symp­toms — how­ev­er, there is cur­rent­ly no cure or med­ical treat­ment [14] [15]. There are only symp­to­matic treat­ment options for the most com­mon comor­bidi­ties such as dysau­tono­mia, immune defi­cien­cies, and mast cell dis­ease. There des­per­ate­ly needs to be more research, recog­ni­tion, and pro­tec­tion for those affect­ed who receive lit­tle sup­port from health and wel­fare sys­tems [16].

A standing clay figure is desperately holding its head with both arms. Four batteries lie on the ground. In the body of the figure there are holes in which the batteries are previously inserted.

Impor­tant facts: 

  • ME/CFS is not a rare ill­ness. 
    There are at least 25,000 affect­ed by it in Aus­tria, based on a con­ser­v­a­tive esti­mate of preva­lence among 0.3% of the pop­u­la­tion. Oth­er cal­cu­la­tions assume a high­er num­ber of cas­es of up to 80,000 peo­ple [1] [2]. There are 17–20 mil­lion peo­ple affect­ed glob­al­ly. Preva­lence in the world pop­u­la­tion is 0.89%.  This is why those affect­ed often use the phrase/hashtag #mil­lion­s­miss­ing on social media. 

  • The ill­ness affects all age groups, includ­ing chil­dren. Two thirds of those affect­ed are women. 70% of ME/CFS suf­fer­ers are unable to work, approx. 25% are severe­ly affect­ed and house- or bed­bound [17] [3]. 

  • ME/CFS is one of the most func­tion­al­ly lim­it­ing and simul­ta­ne­ous­ly debil­i­tat­ing chron­ic dis­eases. Qual­i­ty of life is even low­er than for peo­ple with can­cer or strokes [1] [18]. The phys­i­cal and men­tal lim­i­ta­tions are enor­mous com­pared to oth­er ill­ness­es (e.g. lung dis­ease, depres­sion, dia­betes). The emo­tion­al bur­den placed upon fam­i­ly car­ers is com­par­a­tive­ly high [19]. 

  • There are cur­rent­ly no out­pa­tient con­tact cen­tres or emer­gency facil­i­ties for ME/CFS in Aus­tria [1]. 

  • ME/CFS is not a men­tal ill­ness. The trig­ger is assumed to be a com­bi­na­tion of genet­ics and envi­ron­men­tal fac­tors, e.g. infec­tions (EBV, Covid [20]), surgery, trau­ma, giv­ing birth, or aller­gic reac­tions. It may also start grad­u­al­ly [21] [22] [23]. 

  • The most com­mon mis­di­ag­noses include depres­sion, burnout, somato­form dis­or­der, and neuras­the­nia [1]. Research also con­firms that some ther­a­peu­tic approach­es, such as exer­cise, can be par­tic­u­lar­ly dam­ag­ing [24]. 

  • When cause of death for peo­ple with ME/CFS is com­pared with that of the rest of the pop­u­la­tion (data based on the USA), we can see a high­er over­all mor­tal­i­ty rate: 55.8 vs 73.5 years old,  we well as a low­er aver­age age for sui­cide: 41.3 vs  47.4 years old [25]. Although rare, it is pos­si­ble to die from ME/CFS [26]. ME/CFS is rarely includ­ed on death cer­tifi­cates. In gen­er­al, sta­tis­tics and the def­i­n­i­tion of cause of death dif­fer great­ly, main­ly due to the pres­ence of comor­bidi­ties and region­al dif­fer­ences [27].

A bird holds a red lobster in its long beak and dips it into a pot of liquid. The bird is on a shelf next to the pot.

List of references:

Öster­re­ichis­che Gesellschaft für ME/CFS (2021): ME/CFS Report Öster­re­ich 2021. https://cfs-hilfe.at/report-2021/ (2022, Feb­ru­ary 23)

Lim EJ., Ahn YC., Jang ES., Lee SW., Lee SH., & Son CG. (2020): Sys­tem­at­ic review and meta-analy­sis of the preva­lence of chron­ic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). J. Transl. Med., 18, 100. https://doi.org/10.1186/s12967-020–02269‑0 (2022, Feb­ru­ary 24)

Health­care (2021): Spe­cial Issue “ME/CFS – the Severe­ly and Very Severe­ly Affect­ed”. https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue (2022, Feb­ru­ary 24)

Deutsche Gesellschaft für ME/CFS e.V. (2021): Was ist ME/CFS?. https://www.mecfs.de/was-ist-me-cfs/ (2022, Feb­ru­ary 23)

Deutsches Insti­tut für medi­zinis­che Doku­men­ta­tion und Infor­ma­tion (DIMDI) (2018, August 24): ICD-10-WHO Ver­sion 2019. Kapi­tel VI, Krankheit­en des Ner­ven­sys­tems. https://www.dimdi.de/static/de/klassifikationen/icd/icd-10-who/kode-suche/htmlamtl2019/block-g90-g99.htm (2022, Feb­ru­ary 24)

Arroll M. A., Attree E. A., O’Leary J. M., & Dancey C. P. (2014): The delayed fatigue effect in myal­gic encephalomyelitis/chronic fatigue syn­drome (ME/CFS). Fatigue: Bio­med­i­cine, Health & Behav­ior 2(2). https://doi.org/10.1080/21641846.2014.892755 (2022, Feb­ru­ary 24)

Cen­ters for Dis­ease Con­trol and Pre­ven­tion (2021, Jan­u­ary 27): Symp­toms of ME/CFS. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html (2022, Feb­ru­ary 24)

Stuss­man B., Williams A., Snow J., Gavin A., Scott R., Nath A., & Walitt B. (2020): Char­ac­ter­i­za­tion of Post-exer­tion­al Malaise in Patients With Myal­gic Encephalomyelitis/Chronic Fatigue Syn­drome. Fron­tiers in Neu­rol­o­gy, 11, 1025. https://doi.org/10.3389/fneur.2020.01025 (2022, Feb­ru­ary 24)

Dafoe, W. (2021): Extreme­ly Severe ME/CFS—A Per­son­al Account. Health­care 9(5), 504. https://doi.org/10.3390/healthcare9050504 (2022, Feb­ru­ary 24)

MEpe­dia (2022, Jan­u­ary 10): Inter­na­tion­al Con­sen­sus Cri­te­ria. https://me-pedia.org/wiki/International_Consensus_Criteria (2022, Feb­ru­ary 23)

Car­ruthers B. M., van de Sande M. I., De Meir­leir K. L., Kli­mas N. G., Brod­er­ick G., Mitchell T., Staines D. ‚Powles A. C. P., Speight N., Vallings R., Bate­man L., Baum­garten-Aus­trheim B., Bell D. S., Car­lo-Stel­la N., Chia J., Dar­ragh A., Jo D., Lewis D., Light A. R., Mar­shall-Gradis­bik S., Mena I., Mikovits J. A., Miwa K., Murovs­ka M., Pall M. L., & Stevens S. (2011): Myal­gic encephalomyelitis: Inter­na­tion­al Con­sen­sus Cri­te­ria. Jour­nal of Inter­nal Med­i­cine, 270(4):327–338. https://doi.org/10.1111/j.1365–2796.2011.02428.x (2022, Feb­ru­ary 24) 

Stingl M. (2021, Novem­ber 28): Long Covid Update 2 [Blog post]. http://www.neurostingl.at/2021/11/28/long-covid-update‑2/ (2022, Feb­ru­ary 24)

science.ORF.at (2022, Jan­u­ary 27): Long Covid: Rufe nach besser­er Ver­sorgung. https://science.orf.at/stories/3211104/ (2022, Feb­ru­ary 24)

The Solve ME/CFS Ini­tia­tive (2022): https://solvecfs.org/ (2022, Feb­ru­ary 24)

Lopez-Leon S., Weg­man-Ostrosky T., Perel­man C., Sepul­ve­da R., Rebolle­da P. A., Cua­pio A., & Vil­lapol S. (2021): More than 50 Long-term effects of COVID-19: a sys­tem­at­ic review and meta-analy­sis. Sci­en­tif­ic Reports 11, 16144. https://doi.org/10.1038/s41598-021–95565‑8 (2022, Feb­ru­ary 24)

open­Pe­ti­tion (2021): ME/CFS: ANERKENNUNG, MEDIZINISCHE VERSORGUNG & ABSICHERUNG VON BETROFFENEN SOWIE FORSCHUNGSFÖRDERUNG. https://www.openpetition.eu/at/petition/online/me-cfs-anerkennung-medizinische-versorgung-absicherung-von-betroffenen-sowie-forschungsfoerderung (2022, Feb­ru­ary 24)

Bakken I. J., Tveito K., Gunnes N., Ghaderi S., Stoltenberg C., Trogstad L., H åberg S. E., & Mag­nus P. (2014): Two age peaks in the inci­dence of chron­ic fatigue syndrome/myalgic encephalomyelitis: a pop­u­la­tion-based reg­istry study from Nor­way 2008–2012. BMC Med, 12, 167. https://doi.org/10.1186/s12916-014‑0167‑5 (2022, Feb­ru­ary 24)

Hvid­berg M. F., Brinth L. S., Ole­sen A. V., Petersen K. D., & Ehlers L. (2015): The Health-Relat­ed Qual­i­ty of Life for Patients with Myal­gic Encephalomyelitis / Chron­ic Fatigue Syn­drome (ME/CFS). PLOS ONE 10(7):e0132421. https://doi.org/10.1371/journal.pone.0132421 (2022, Feb­ru­ary 24)

Nac­ul L. C., Lac­er­da E. M., Cam­pi­on P., Phe­by D., Drach­ler MdL., Leite J. C., Poland F., Howe A., Fayyaz S., & Molokhia M. (2011): The func­tion­al sta­tus and well being of peo­ple with myal­gic encephalomyelitis/chronic fatigue syn­drome and their car­ers. BMC Pub­lic Health, 11, 402. https://doi.org/10.1186/1471–2458-11–402 (2022, Feb­ru­ary 24)

Komaroff A. L. & Bate­man L. (2021): Will COVID-19 Lead to Myal­gic Encephalomyelitis/Chronic Fatigue Syn­drome?. Fron­tiers in Med­i­cine, 7:606824. https://doi.org/10.3389/fmed.2020.606824 (2022, Feb­ru­ary 24)

Cen­ters for Dis­ease Con­trol and Pre­ven­tion (2019, Novem­ber 19): Myal­gic Encephalomyelitis/Chronic Fatigue Syn­drome. Pre­sen­ta­tion and Clin­i­cal Course of ME/CFS. https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html (2022, Feb­ru­ary 24)

MEpe­dia. (2021, May 5): Genet­ics of chron­ic fatigue syn­drome. https://me-pedia.org/wiki/Genetics_of_chronic_fatigue_syndrome (2022, Feb­ru­ary 24)

Kashi A. A., Davis R. W., & Phair R. D. (2019): The IDO Meta­bol­ic Trap Hypoth­e­sis for the Eti­ol­o­gy of ME/CFS. Diag­nos­tics, 9(3), 82. https://doi.org/10.3390/diagnostics9030082 (2022, Feb­ru­ary 24)

Twisk F. N. M. & Maes M. (2009): A review on cog­ni­tive beha­vo­r­ial ther­a­py (CBT) and grad­ed exer­cise ther­a­py (GET) in myal­gic encephalomyelitis (ME) / chron­ic fatigue syn­drome (CFS): CBT/GET is not only inef­fec­tive and not evi­dence-based, but also poten­tial­ly harm­ful for many patients with ME/CFS. Neu­ro endocrionol­o­gy let­ters, 30(3):284–99. https://pubmed.ncbi.nlm.nih.gov/19855350/ (2022, Feb­ru­ary 24)

McMani­men S. L., Deven­dorf A. R., Brown A. A., Moore B. C., Moore J. H., & Jason L. A. (2016): Mor­tal­i­ty in Patients with Myal­gic Encephalomyelitis and Chron­ic Fatigue Syn­drome. Fatigue: Bio­med­i­cine, Health & Behav­ior, 4(4):195–207. https://doi.org/10.1080/21641846.2016.1236588 (2022, Feb­ru­ary 25)

Mepe­dia (2021, Decem­ber 9): List of deaths caused by myal­gic encephalomyelitis or chron­ic fatigue syn­drome. https://me-pedia.org/wiki/List_of_deaths_caused_by_myalgic_encephalomyelitis_or_chronic_fatigue_syndrome (2022, Feb­ru­ary 25)

MEpe­dia (2021, Decem­ber 8): Caus­es of death. https://me-pedia.org/wiki/Causes_of_death (2022, Feb­ru­ary 25)