MEandCOVID

ANZMES speaks on RNZ about reclassification

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ANZMES President, Fiona Charlton spoke alongside Emeritus Professor Warren Tate from the University of Otago, and patient advocate Tom Harris to Kathryn Ryan on Nine to Noon on Radio New Zealand this morning.

You can view the Radio New Zealand interview news bulletin here: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018892129/the-fight-to-get-me-chronic-fatigue-syndrome-classified

You can listen to the interview episode here:
https://www.rnz.co.nz/audio/player?audio_id=2018892129

The petition to reclassify Myalgic Encephalomyelitis to a disability is currently with the Health Select Committee, who are due to provide their recommendations to parliament in the coming months. This follows an oral submission to them by ANZMES on May 3rd 2023, a written submission presented in October 2022, and the petition with 6,444 signatures, submitted to parliament in September 2022.

ANZMES created this petition to draw attention to the fact that the system is not working for people with ME/CFS (pwME). Many fall through the cracks, many rely on whānau to care for them. Those who aren’t lucky enough to have family to care for them, experience post exertional malaise crashes regularly just trying to make a meal or do laundry. This means they’re in a constant state of unwellness with a myriad of over 100 symptoms. You can learn more about post exertional malaise on ANZMES World ME Day page.

Put simply:

ME/CFS fits the definition for disability
BUT
DOES NOT fit the criteria to access disability support services.

Those same support services are available under Long Term Support – Chronic Health Conditions
BUT
People with ME/CFS DO NOT fit the NASC* criteria to access them.

The system is not working for people with ME/CFS.

*NASC – Needs Assessment Service Coordination.

ME/CFS fits all definitions for disability created by the United Nations, The World Health Organisation, The Human Rights Act 1993, Statistics NZ, and the NZ government’s own definition (copied below).
A disability is an impairment — physical, intellectual or sensory — that lasts
for more than 6 months and limits your ability to carry out day-to-day activities.

pwME experience physical, cognitive, and sensory impairments.
The condition for most, is chronic, for some it is lifelong.
To be diagnosed with ME/CFS, one must experience at least a 50% reduction in ability to function (compared with pre-illness capacity).

ME/CFS fits the definition of disability. ME/CFS is a disability.

What would it mean to reclassify?
A change in classification would be a lifeline to dedicated support and wider acknowledgement that this illness is disabling, providing fairer access to established support and care.

Being classified as a disability demonstrates the government understands how truly disabling this condition is.
It legitimises ME/CFS as a physiological disease, which would foster the standardising of healthcare for pwME. Legitimising ME/CFS as the disability it is, should override and negate outdated opinions and treatments. It would provide pwME protection of rights as a disabled person.

It would ensure the government upholds its legal obligation to adhere to the United Nations (UNCRPD) Report (September 2022) which states that ME/CFS should be included in disability policies and supported by disability services.

It will enable pwME to fit into the criteria for NASC assessment for home help services. Access to services equates to intervention that promotes recovery or at the very least improvement in symptom management. When a person is constantly exerting beyond their energy capabilities, they crash. This is a health issue. NASC assessments are not conducted by the Ministry of Social Development, they are conducted through hospitals and the healthcare system. It is a healthcare issue.

ANZMES President, Fiona Charlton states “Members of Parliament are elected by the people, for the people. It is a democratic government’s role to ensure all policies, procedures, and programmes meet the needs of all New Zealanders. People with ME/CFS are New Zealanders. Yet, their needs are not being met. There is no-one in parliament representing us. We have to advocate for ourselves, yet who is listening? Who in parliament will stand up for and advocate for the needs of pwME? Who will ensure our needs are met?”

In 2012, following a petition by ANZMES Executive Committee member, Wendy Matthews, the then Health Select Committee made the recommendation to reclassify ME/CFS as a disability.

This was NOT implemented by government.

Fiona Charlton states “We have hope that the Health Select Committee will once again make the recommendation to reclassify ME/CFS as a disability.
However this time, we also urge these committee members to use their roles within parliament to ensure the government implements the advice.”

ANZMES invite members of parliament to speak with them. ANZMES has the knowledge, expertise, and lived experience. ANZMES has world-renowned clinicians on the executive committee and medical team, and researchers like Emeritus Professor Warren Tate are available for discussions.

ANZMES current Royal NZ College of General Practitioners (RNZCGP) CME (continuing medical education) accredited series: Know M.E. is freely available to all health professionals seeking to understand the biomedical, physiological nature of ME/CFS and evidence-based management strategies.

The information is available for a considered, evidence-based response from parliament to meet the needs of people with ME/CFS. ANZMES offers solutions in its written submission (October 2022), and written report submitted to Health and Disability Ministers and Commissioners in July 2022. You can view the oral submission here: anzmes-speaks-to-parliament.

ANZMES looks forward to the recommendations from the Health Select Committee in the coming months.

ANZMES is dedicated to continually advocating, supporting, educating, and funding research for pwME.

Who are ANZMES?
The Associated New Zealand Society for ME/CFS (ANZMES) have been providing information, awareness for ME/CFS, funding research, and advocating for people with ME/CFS for the past 43 years (since 1980). As the national advisory body for ME/CFS in New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME/CFS voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership. ANZMES is a RNZCGP registered provider for continuing education. Health professionals can earn CME/CPD credits with ANZMES latest education programme – Know M.E. – a video podcast and news series featuring up-to-date, evidence based research and information on ME/CFS and Post COVID Conditions.

ANZMES Preliminary survey findings

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Introduction

At the request of the ME/CFS community, ANZMES has issued a survey relating to reactions experienced by the community to the COVID-19 Pfizer BioNTech vaccine. ANZMES also sought to ascertain prevalence of Long COVID and COVID-19 infection in the community. The opportunity was also utilised for respondents to express interest in participating in a potential fractionated dosing trial.

This report contains preliminary findings for responses received from 21st October 2021 to 10th November 2021. This survey is still open to capture experiences after these dates, as vaccination decisions are ongoing.

Please note that this survey is classed as a self-report questionnaire which seeks to ascertain the subjective experience of people with ME/CFS and co-morbid conditions. The information collected is therefore anecdotal data. No clinical research has been conducted.

Respondents

  • 395 respondents identify with an ME/CFS diagnosis
  • 144 with Fibromyalgia (some overlap with ME/CFS)
  • 19 with COVID-19
  • 5 diagnosed with, and 32 suspect, Long COVID

The majority of respondents have a clinical diagnosis of ME, with 25 self-diagnosed. Most are unsure as to which diagnostic criteria for ME was used.

Some questions have less respondents, therefore numbers are indicated in the relevant sections.

Functional capacity (pre-vaccination)

Forms response chart. Question title: What is your current functional capacity (with ME/CFS and/or FM and/or Long COVID). Number of responses: 446 responses.

  • 32.3% (144 individuals) are unable to work, confined to their home with a lot of rest required.
  • 25.8% (115) are able to work part-time at home.
  • 25.5* (115) are able to work part-time outside of the house.
  • 9.9% (44) are able to work full-time with mild-moderate symptoms with activity.
    1.1% (5) are able to work full-time without symptoms.
    * These respondents were mostly COVID-19 infection or Long COVID respondents without ME/CFS. 
  • 4.3% (19) are bedbound most of the time.
  • 0.9% (4) are bedbound and unable to care for themselves.

Vaccination rates

The majority of respondents have had two doses of the Pfizer vaccination.

  • 64.5% (296) two doses.
  • 16.1& (74) single dose.
  • 19.2% (88) have not been vaccinated.

Of the 296 with two doses, the duration between doses was 6 weeks or more for 166 individuals and 3 weeks for 130.

Pattern for capacity and reaction

These findings suggest that the more disabling the ME/CFS symptoms, the more prone to a relapse after vaccination but that relapse can occur at any functional capacity state for pwME. This was analysed when there were 241 responses.

Temporarily worsenedImprovedNo changeWorsened into relapseWorsened beyond illnessNot vaccinatedNo answer
Part-time work home228791142
Part-time outside house22317140122
Full-time work mild-mod with activity
ME
FM
Long COVID/COVID

3
2
0

0
0
2

4
1
3

3
1
0

0
0
0

2
0
1

2
0
5
Unable to work, confined to house23
6
3 temp		1518787
Bedbound mostly2003011
Bedbound unable to care for self0001011
Overall ME7220434883020

First dose vaccination reaction and duration

There were 39 individuals who did not experience any symptoms. For those who did experience reactions to the first dose of the vaccine, these were consistent with the expected normal immune response, e.g.: 

  • sore at injection site (300)
  • tired/fatigued (219)
  • Headache (142)
  • nausea/gastrointestinal issues (62)
  • fever/chills (56)
  • Swollen lymph nodes (46)
  • Sleep issues/insomnia (44)

5 people experienced heart palpitations and/or anxiety 3 people experienced skin sensitivity and/or allergy flares, with 2 people experiencing brain fog/cognitive issues.

Forms response chart. Question title: These effects lasted for:. Number of responses: 378 responses.

  • For most people (130) these symptoms lasted 1-2 days.
  • For 93 individuals it lasted 3-6 days.
  • 44 experienced symptoms for 7-14 days.
  • 35 for over 2 weeks.
  • 37 have not recovered.

Second dose reaction and duration

As has been reported by the general public, the findings from this survey suggest that pwME also experienced more adverse reactions to the second dose of the Pfizer vaccine. However there were 54 individuals who did not experience any symptoms.

  • e.g. sore at injection site (213)
  • tired/fatigued (209)
  • Headache (139)
  • fever/chills (72)
  • Swollen lymph nodes (48)
  • Muscle aches/joint pain (147)

2 experienced skin sensitivity, 2 experienced fibromyalgia flare-ups, 2 experienced palpitations and/or anxiety symptoms, 2 experienced brain fog/cognitive issues.

Forms response chart. Question title: These effects lasted for:. Number of responses: 319 responses.

  • For 97 individuals these symptoms lasted 1-2 days.
  • For 78 individuals it lasted 3-6 days.
  • 26 experienced symptoms for 7-14 days.
  • 20 for over 2 weeks.
  • 44 have not recovered.

Vaccine effect on state of illness/wellness for 359 respondents

  • 137 (38.1%) experienced no change/stay the same
  • 118 (32.9%) temporarily worsened but have returned to baseline
  • 71 (19.8%) worsened and not returned to baseline – relapsed
  • 22 (6.1%) improved
  • 11 (3.1%) worsened beyond anything experienced in illness to date – severe relapse

289 respondents did not have any new symptoms that they could attribute to the vaccine.

52 stated that they had new symptoms that they could attribute to the vaccine. These symptoms tended to be over-activation of the immune response, e.g. sore throat, swollen neck glands, allergy reactions. Of these 52 – 4 individuals have gastrointestinal issues, 2 experienced more fatigue whilst 1 indicated improved energy.

Clinical care

From 383 responses 314 (82%) were not offered clinical care during vaccination, 15 (3.9%) were offered clinical care, 19 (5%) were unsure. 25 people asked for specific clinical care during the vaccination process. Of those offered clinical care the options were 30 minute observation rather than the normal 15, separate areas with direct nurse observation. Others were advised by their GPs to rest and take antihistamines pre- and post-vaccination.

Caregiving requirements

From 353 respondents 50 require ongoing caregiving for their ME/CFS and/or FM and 70 required care after vaccination. 244 people do not require caregiving before and 230 after.

Fractionated dosing interest

If fractionated / lower dosing had been an option, of 115 responses 48 stated they would have considered it, 23 said they would not consider it and 44 were unsure.

Of 88 responses for those reluctant to have the vaccine, 57 would consider lower dosing options, 10 would not, and 21 were unsure.

Of 124 responses to indicate interest in participation in a potential trial into fractionated dosing, 61 responded that they are interested, 31 may be interested, and 32 are not.

Antihistamine usage

Of 115 responses 45 did not take any pre- or post-vaccination, 70 did.

Reasons for not being vaccinated

Of 1Anxiety/worry/fear about potential adverse reactions, previous adverse reactions to other vaccines, concern about the safety of the vaccine, high ME/CFS symptomatology, chemical sensitivities/MCS/MCAS, not currently well enough to risk adverse reactions.

COVID-19 / Long COVID

19 respondents have been diagnosed with SARS-CoV-2 (COVID-19) infection.

169 respondents have had COVID-19 tests.

5 people have been diagnosed by a medical professional with Long COVID.

32 people suspected they have Long COVID after a viral infection due to ongoing or lingering classic COVID-19 symptoms and having been connected to a location of interest, an overseas hot zone of infection, or have remained unwell after experiencing a viral infection that has not been confirmed as COVID but has the same symptoms.

Symptoms by response from 57 individuals:

  • Fatigue 41 (71.9%)
  • Brain fog/cognitive issues 39 (68.4%)
  • Shortness of breath 31 (54.4%)
  • Flu-like (fever chills, joint/muscle pain, headaches) 25 (43.9%)
  • Gastrointestinal 24 (42.1%)
  • Depression 10 (17.5%)
  • Organ damage 9 (15.8%)

Duration of illness with Long COVID or suspected Long COVID

From 57 responses

  • 14 individuals have been unwell for 18-22 months+
  • 6 individuals have been unwell for  6-10 months
  • 37 for less than 6 months
  • 1 for many years, a pre-COVID infection

Demographic information

From 447 responses, respondents identify as:

  • Female – 391 (87.5%)
  • Male – 47 (10.5%)
  • Non-binary – 7 (1.6%)
  • Prefer not to say – 2 (0.4%)

Age range from 453 responses:

  • Under 18 = 10 (2.2%)
  • 18-24 = 18 (4%)
  • 25-39 = 100 (22.1%)
  • 40-49 = 109 (24.1%)
  • 50-59 = 108 (23.8%)
  • 60-69 = 82 (18.1%)
  • 70-79 = 22 (4.9%)
  • 80+ = 4 (0.9%)

From 447 responses, respondents live in the following regions: 

  • Northland = 36 (8.1%)
  • Auckland = 143 (32.1%)
  • Bay of Plenty = 32 (7.2%)
  • Waikato = 21 (4.7%)
  • Gisborne = 3 (0.7%)
  • Hawkes Bay = 14 (3.1%)
  • Taranaki = 6 (1.1%)
  • Whanganui/Manawatu = 17 (3.8%)
  • Wairarapa = 1 (0.2%)
  • Wellington = 53 (11.9%)
  • Nelson/Tasman = 36 (8.1%)
  • Marlborough = 3 (0.7%)
  • West Coast = 2 (0.4%)
  • Canterbury = 47 (10.5%)
  • Otago = 40 (9%)
  • Southland = 9 (2%)
  • Overseas = 8 (1.8%)
  • Nomadic = 2 (0.4%)

ME/CFS Day May 12, 2021

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May 12th is the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. As we mark this day each year, we highlight how you can support the millions of people globally (and at least 25,000 here in NZ) who suffer from ME/CFS. We mark this day on Florence Nightingale’s birthday, because it is thought that she developed ME/CFS after an infection contracted during the Crimean War.

ME/CFS is a serious, disabling, long-term disease which affects multiple bodily systems (immune, endocrine, neurological and autonomic). [1] The World Health Organisation classified ME/CFS as a neurological disease back in 1969. Despite this, ME/CFS has often been misunderstood, stigmatised as psychosomatic, and underfunded. Today we have a much clearer understanding of the biological basis for the disease through research from the likes of Harvard, Stanford, Cornell, and DePaul universities in the USA, and our very own Emeritus Professor Warren Tate of the University of Otago.

This year, with COVID-19 still present globally, we also want to direct attention to the estimated 25-35% of cases [2] who have not recovered from the virus. Those people who are still unwell 12 weeks after the expected recovery period, are classed as having “Long COVID” and some go on to receive a diagnosis of ME/CFS as well.

There are similarities between ME/CFS and Long COVID (some symptoms overlap):

ME-CFS *Long COVID *
Severe fatigue with post-exertional malaiseFatigue
Cognitive dysfunction (brain fog, memory lapses)Brain fog
Gastrointestinal issuesGastrointestinal issues
shortness of breathshortness of breath
Fevers/ChillsFevers/Chills
* this is not an exhaustive list of symptoms

This is not surprising because a large percentage of those with ME/CFS, develop it after not recovering from a virus such as Epstein Barr/Mononucleosis, SARS-CoV, etc., or from other infectious illnesses such as Lyme disease (Mayo Clinic, 2020).

What does it mean to have ME/CFS? The list above is not exhaustive. Those with ME/CFS also experience significant deep muscular pain and can also experience a varying degree of symptoms that link to dysfunction of distinct systems in the body [3]:

ImmuneNeuroendocrineAutonomic
Recurrent sore throats, flu-like symptoms, tender/swollen lymph nodesThermostatic dysregulation (feverish but will cold extremities (hands, feet), night sweats, intolerance of heat and coldCircadian rhythm dysfunction (exhausted during day, wide awake at night unable to sleep). Unrefreshing sleep
Sensitivities (to light, sound, smells, food, chemicals, medications)Information processing and thinking difficulties, perceptual disturbancesOrthostatic intolerance, irregular heartbeat, low blood pressure, POTS

ME/CFS is a chronic illness, meaning it is long term.

It can be classed as having three distinct levels of symptom severity [4]:

Mild – at least a 50% decrease in pre-illness activity but may still be able to achieve part-time work and activities

Moderate – mostly housebound (can’t attend work/school or do normal activities)

Severe – bedbound and dependent on help with all daily care
(this occurs in approximately 25% of all ME/CFS cases).

ME/CFS knows no bounds – it affects all ages, ethnicities, genders and socioeconomic groups. At this point in time there is no cure, but there is research going on to develop a suitable treatment based on previous research into root cellular causes and dysfunction. Currently Prof. Tate is working on comparing the molecular similarities between ME/CFS and Long COVID patients recruited through the practice of collaborating physician Dr. Rosamund Vallings, in order to not only understand the underlying pathophysiology (root causes and malfunctions) but also to discover potential treatments. [5] Dr. Tate states “Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.” 

How can you help?
5 ways:

1 Educate – This awareness day, please take time to learn more about ME/CFS and Long COVID by visiting links suggested in this article, by perusing the rest of the ANZMES website and joining our Facebook page: If you or someone you know has ME/CFS share your personal stories with others, on social media, and take time to listen to others’ stories.

2 Support – on May 12th wear BLUE to raise awareness and show support for people with ME/CFS, their families and caregivers as well as the researchers who study ME/CFS. Please use social media to spread information about ME/CFS – share this article, and post photos of you and your family and friends wearing blue. Use hashtags #ISTANDforMECFS #MECFSUnity #ANZMES #BLUEforMECFS #millionsmissing #thelonghaulandME #MEandCOVID #solveMECFS

3 Share our posters and memes and this blog on social media, with friends and family, with your local GP and healthcare providers, and lets show all those living with ME/CFS and Long COVID that they are not alone, they are heard and supported.

Posters:

4 Lobby your local MP to demand that:

  • Evidence-based health guidelines are used by all government agencies to ensure accurate information about ME/CFS for timely diagnosis and management and access to necessary services (including home help and supported living payments)
  • Dedicated research funding is set aside for treatment development
  • ME/CFS is reclassified as a disability so that those unable to work due to the severity of their illness are able to gain access to the services they need.

5 Join our organisation to receive lobbying letter templates, information sheets, and access to the latest news and developments.

We look forward to seeing your presence on social media this May 12th for ME/CFS International Awareness Day 2021. Thank you.

[1] Kerr, J. (2020). https://doi.org/10.3390/biom10111484

[2] http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects and https://www.omf.ngo/covid-19-to-me-cfs-study/

[3] For a more comprehensive list visit: https://www.massmecfs.org/cfids-me-cfs?start=1 and https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

[4] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

[5] http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects

Awareness Day: Media/Press Release

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May 12 marks the international Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, on Florence Nightingale’s birthday (as it is thought she developed ME/CFS after an infection contracted during the Crimean war). Each year on this day ANZMES (the Associated New Zealand ME Society) seeks to provide education and build awareness, as well as advocate for and support those with ME/CFS and their families. This year, with COVID-19 still present globally, attention must also be on those diagnosed with Long COVID. Long COVID will present new challenges. Many of those challenges have already been faced by the ME/CFS community.

Myalgic Encephalomyelitis (ME/CFS) is a serious long-term illness causing disabling symptoms exacerbated by both mental and physical exertion [1]. Despite the person often appearing ‘well’ there are debilitating symptoms that include but are not limited to: incapacitating exhaustion, post-exertional malaise, pain, sleep disturbances, cognitive and gastro-intestinal issues, and orthostatic intolerance (severe light-headedness when standing). The illness affects all genders, races and ethnicities. It affects children, those at university still studying, those just entering the workforce, mums and dads juggling home and work and people at the peak of their careers, right up to the elderly who already have other struggles. Some will recover after some months or years, but those who are still sick two years after onset are likely to suffer this illness for the rest of their lives.  

In NZ there are at least 25,000 people living with ME/CFS – that’s approximately 1 in every 250 adults and 1 in every 134 youth. It commonly has acute onset (occurs suddenly) after a viral illness (e.g. Epstein Barr/Mononucleosis and SARS-CoV) [2]. The COVID-19 virus (SARS-CoV-2) has resulted in a post-viral syndrome for an estimated 25-35% of all cases [3]; a syndrome similar in symptomatology to ME/CFS. Those still unwell twelve weeks after onset [4], are classed as having Long COVID and some go on to receive an ME/CFS diagnosis too. This means the prevalence of ME/CFS in NZ and worldwide is increasing. 

ME-CFS [5]Long COVID [6]
Severe fatigue with post-exertional malaiseFatigue with post-exertional malaise
Cognitive dysfunction (brain fog, memory lapses)Brain fog
Gastrointestinal issuesGastrointestinal issues
shortness of breathshortness of breath
Fevers/ChillsFevers/Chills

There is currently no cure for ME/CFS. However researchers around the world, including Cornell, Stanford and Harvard Universities in the USA, are working to understand the disease, find a diagnostic test and develop more treatments. Despite this, research is woefully underfunded. In the last year The European Union has called for more funding [7]. Researchers here in New Zealand, including a team led by the Rutherford Medal winner Emeritus Professor Warren Tate of the University of Otago, have to rely on donations from people with ME/CFS, their families and organisations such as ANZMES. One such study also funded by Brain Research NZ is to assess the pathophysiological similarities between ME/CFS and those diagnosed with Long COVID [8]. Dr. Tate states “Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.” [9]

The increase of people with ME/CFS and Long COVID has far-reaching repercussions. For society this means a loss of available people in the workforce and further burdens to the public health system. For the individual it means increased medical costs and a loss of salary. Between 40-81% of those with ME/CFS are unable to maintain employment due to fluctuating, disabling symptoms [10]. A decrease in social contact can result in social isolation, loneliness, and diminished quality-of-life [11]. Even those with ‘mild’ symptoms experience at least a 50% decrease in pre-illness activity [12]. Imagine being unable to meet your friend for coffee at the local café because you don’t even have the energy to shower and dress. Or consider being housebound, not just for a few weeks (like many kiwis experienced during lockdown) but for decades or a lifetime. Imagine the teenager who cannot physically attend school and has to complete coursework from bed. Or picture not being able to play with your children or grandchildren, and missing out on seeing them in school plays and sports. This is the reality for many with ME/CFS.

This year, on the International ME Awareness Day (May 12th), please think about those with ME/CFS and Long COVID, who face ongoing isolation and difficulties associated with living with a chronic illness.

Resources are available for patients, carers, teachers and health professionals through the Associated New Zealand ME Society (ANZMES) at www.anzmes.org.nz.

#myalgicencephalomyelitis #MECFS #LongCOVID #PressRelease #MediaRelease #Fibromyalgia #postexertionalmalaise #millionsmissing #chronicillness #chronicillnesssupport #chronicillnesscommunity #autoimmune #chronicillnesswarriors #endMECFS #openmedicinefoundation #longCOVIDalliance #longhaulers #thelonghaulandME #MEandCovid19 #MEandCOVID #SolveMECFS #WarrenTate #RosVallings #AnnaBrooks #ANZMES #MECFSexperts #nationaladvisoryforMECFS

[1] https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

[2] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[3] Open Medicine Foundation estimates https://www.omf.ngo/covid-19-to-me-cfs-study/

[4] https://www.medicalnewstoday.com/articles/long-covid#definition

[5] For a more comprehensive list visit: https://www.massmecfs.org/cfids-me-cfs?start=1 and https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

[6] https://www.pharmaceutical-technology.com/comment/long-covid-complications/

[7] https://www.europarl.europa.eu/news/en/agenda/briefing/2020-06-17/22/myalgic-encephalomyelitis-more-funding-needed-for-research-into-complex-illness

[8] (http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects)

[9] https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

[10] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[11] Jason, et. al, (2008) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

[12] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

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