Visit the Learn From ME Event page to view presentations and information for World ME Day.
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2022 World ME Day ANZMES Press Release
2022 World ME Day 12th May ANZMES Press Release
Will you #LearnFromME this May 12?
May 12 is World ME Day. This year, the Learn From ME global campaign acknowledges that people with ME/CFS are experts of their own illness experience. They have a lot to offer those experiencing Long COVID through insights, treatment plans that work and understanding of what it is like to live with a chronic illness.
What can the Long COVID community learn from ME/CFS?
- That post-viral syndromes are real. Some people recover, others don’t and this is determined by the unique physiological makeup of each individual. They can learn to pace themselves, to not give up, and to have hope with new research being released. They can learn to advocate for themselves and they will learn and know that the ME/CFS community supports them.
- Resting is key to being able to achieve activities. Pacing is vital for sustaining periods of activity. Pacing is a common management tool for people with ME/CFS. When you apply pacing to your life, you are taking control of how you spend your time – finely balancing activity with rest to prevent overexertion. For people with ME/CFS overexertion can result in what is known as post-exertional malaise (PEM) – whereby a relapse of symptoms can cause the person to be bed bound for days unable to care for themselves, or they experience an exacerbation of core symptoms for several weeks. This can happen to people with ME/CFS not only with physical activity but mental/cognitive activity too.
“I learned how to pace the hard way.” Says Jane, a person with ME/CFS. “After repeatedly over-doing it by trying to get things done on one of my good days and then crashing and being bed bound for days after, I slowly learned how to pace my activities. Now I will put a load of washing on and then rest. I’ll peg the washing out and then rest. I can then start on the vacuuming. The key is to learn that I can vacuum one room one day and another room another day. I don’t have to get it all done at once. Balancing between activity and rest means I can sustain activity for longer without causing a relapse of my symptoms.”
Such post-exertional malaise and inability to maintain activity is said to be as a result of malfunctions in the energy production system. Research by Dr. Lynette Hodges from Massey University who has studied PEM extensively shows significant differences in exertion capabilities of people with ME/CFS when compared to healthy controls.
Kathy says “I learned that what I can achieve on one day, I may not be able to achieve on another day. I usually have to spread activity out across the week, it means having an appointment on a Monday and resting on a Tuesday. I have to recover from the exertion of getting showered, dressed, fed, before driving to my appointment, and then the cognitive exertion required to function at that appointment, before getting myself back home. I used to go to the gym 7 days a week, sometimes twice a day, and work full-time, travel, and play sports on the weekend. I lived a full life, now I’m lucky if I can manage to do one thing in a week!”
Recently someone experiencing a COVID-19 infection, talked to her ME/CFS friend “I had to rest for an hour after pegging the washing out. It made me think of you, I don’t know how you deal with this every day, year in year out.”
Edith says: “I’ve learned to not give up. I have hope that with new research being released we will no longer face stigma, that everyone will know this disease is real, and the research proves this.”
By sharing their experiences, it is hoped that the general public, friends, family/whānau, and medical professionals and institutions gain valuable insights about this often maligned condition. For decades there have been misconceptions about this disease. Despite the World Health Organisation classifying it as a neurological disorder in 1969, and adding it as a “post-viral syndrome” in 2019, many health professionals still follow the misguided and unfounded school of thought that it is psychological or psychiatric in nature.
The growing body of biomedical research from around the world and here in New Zealand demonstrates otherwise. Emeritus Professor Warren Tate has identified a biological basis for ME/CFS symptoms. He has shown a dysfunction in the mitochondria (energy-making function of the cell) in people with ME/CFS and disturbed widespread physiology, highlighting the complex chronic nature of this illness. He has also recently submitted a paper regarding the biological processes that facilitate relapse and sustain ME/CFS.
The ME/CFS community has had to be vocal, has had to stand up to misinformation, has had to demand funding for research, and has had to beg for ministry support.
Recently retired, general practitioner, and long-time advocate for people with ME/CFS, Dr. Ros Vallings says “It is so important to get a correct diagnosis according to specific recognised criteria. That way a treatment plan can be established which is most likely to help manage symptoms.” ME/CFS is an umbrella term for a cluster of debilitating symptoms that result from malfunctions in multiple bodily systems. Despite the person often appearing ‘well’ these debilitating symptoms 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).[1]
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.[2] It commonly has acute onset (occurs suddenly) after a viral illness (e.g. Epstein Barr/Mononucleosis and SARS-CoV)[3]. 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. Dr Sarah Dalziel ANZMES medical advisor says “There are around 3,000 young people in New Zealand with ME/CFS and life can change dramatically for them when they get this illness. “Adolescents with ME/CFS identify that remaining engaged in education and therefore the ability to pursue future aspirations is crucially important. This requires a lot of support and education for teachers and parents to help children design an achievable plan for schooling.”
With omicron rife in New Zealand, yet another post-viral syndrome is looming. Of all COVID-19 cases, an estimated 10-30% may develop what is commonly referred to as Long COVID.[5] Many of these will go on to receive an ME/CFS diagnosis too. With over 1 million COVID-19 cases in NZ, that means roughly 100,000-300,000 people could become so ill that they can no longer work, attend school, and for some it will mean a lifetime being bedbound unable to care for themselves, or housebound, unable to maintain consistent activity. This will have huge economic, political, and psychosocial impacts. The government has largely ignored the high percentage of people with ME/CFS in New Zealand who are unable to work or finish school because of their illness. They will not be able to ignore the tide of illness that is threatening to reach our shores very soon. Post-viral syndromes are catastrophic not only in the personal lives of those who are ill, but to their families, community, and have far-reaching economic impacts, it will over-burden our healthcare systems, and may result in more people having to rely on government benefits to survive. It is time to wake up. It is time to invest money in research. It is time to #LearnFromME.
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, the theme for World ME Day is Learn from ME. In conjunction with the World ME Alliance, ANZMES seeks to demonstrate the volume of knowledge that the ME/CFS community can provide.
The Learn From ME Event on May 12, hosted on the ANZMES website provides presentations from Professor Warren Tate, Dr. Anna Brooks, Dr. Rosamund Vallings, and includes two interviews of the lived experience.Resources are available for patients, carers, teachers and health professionals through the Associated New Zealand ME Society (ANZMES) at www.anzmes.org.nz.
https://www.scoop.co.nz/stories/GE2205/S00043/will-you-learnfromme-this-may-12.htm
COVID-19: to vaccinate or not to vaccinate: advice for people with MECFS
The government mandate stipulates that certain industries require vaccination in order to retain employment. Although we have advised MoH that this is not as simple for those people with ME/CFS (pwME) who are affected by this Order, we have not been able to change their decision through our advocacy efforts.
For pwME who are not employed in the mandated industries, there will still be barriers if they choose to remain unvaccinated due to the introduction of vaccine certificates/passports. However the decision to vaccinate or not vaccinate remains a personal choice.
ANZMES provided MoH with a detailed argument in favour of MoH allowing physician discretion on a patient-by-patient basis as to whether a medical exemption is warranted. We have not received a response to our advocacy from MoH to date. The argument stipulated that only the physician and the patient can truly know, based on the patient’s personal medical history, whether a risk of adverse reaction is sufficient enough to warrant a medical exemption.
This was based on Professor Warren Tate’s advice that people with ME/CFS who often experience severe food allergies, chemical hypersensitivities, are prone to frequent debilitating relapses and have a significant compromised level of activity, may be at a higher risk to adverse side effects to vaccination in comparison to people with ME/CFS who do not have these extra dimensions of the illness.
An article released today has a headline suggesting that Professor Warren Tate believes all people with ME should be exempt. This is not the case. Prof. Tate advocates for a subgroup of pwME, as above. [https://www.rnz.co.nz/news/national/456598/expert-says-chronic-fatigue-sufferers-should-be-exempt-from-covid-19-vaccination]
For pwME who do not have these extra dimensions of the illness, ANZMES released an information sheet regarding COVID-19 vaccinations for pwME, which included expert advice from New Zealand and internationally. The recommendations provided by these experts were that contracting COVID-19 poses a greater risk to health than the side effects of the vaccination. However for a small percentage of pwME, the potential adverse reactions may seem to outweigh the risk of contracting the virus. This is because there is potential for a relapse of ME/CFS symptoms. And because household members can provide a level of protection to unvaccinated members if they themselves are vaccinated. [https://anzmes.org.nz/experts-talk-covid-19-vaccine-for-people-with-me-cfs/]
MoH advises on their website that if people with ME/CFS experienced adverse reactions to the first dose of the vaccine, that they could hold off getting the second dose until their symptoms resolve completely. [https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-response-planning/covid-19-mandatory-vaccinations/covid-19-exemptions-mandatory-vaccination#temp-exempt scroll down the page and click on Vaccine Temporary Medical exemptions in either Word or pdf format – updated 30 November. On page 7 of this file you find reference to Myalgic Encephalomyelitis.
Also MoH now states that if the Order applies to a person and they are not vaccinated, but feel that they may be eligible for a temporary exemption, then their usual medical practitioner or nurse practitioner can apply on their behalf. However, it is not that simple for pwME. Based on the criteria that ME/CFS patients would be applying under, the application would need to be done by a relevant specialist (e.g. neurologist, rheumatologist, immunologist, etc.). [https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-response-planning/covid-19-mandatory-vaccinations/covid-19-exemptions-mandatory-vaccination#temp-exempt]
The preliminary findings of the self-reporting survey ANZMES conducted with the ME/CFS and Long COVID community suggests that the reactions to the vaccine have been as varied as the symptomatology of ME/CFS itself. For some there was no adverse reaction. Some improved. For others, only the normally expected immune response was experienced. Whereas for a significant smaller percentage there was a considerable relapse. There does not seem to be a pattern as to who fares well and who experiences a relapse. Although the survey findings suggest that the more disabling the ME/CFS symptoms, the more prone to a relapse after vaccination, relapse can occur at any functional capacity state for pwME. However, it is also likely that no adverse reactions, or only temporary reactions are experienced. This shows how highly individualised vaccine reactions are, just as is the case for the symptomatology of ME/CFS. [https://anzmes.org.nz/anzmes-preliminary-survey-findings/]
ANZMES also petitioned for a fractionated dosing trial at the request of the community. Although this trial will not go ahead, IMAC are investigating the possibility of lower dosing. However, as trials have not been done, MoH advises that lower doses will not be considered sufficient for protection and therefore someone who receives a fractionated dose would not be eligible for a vaccination certificate/passport. Research into the efficacy of lower doses as protection against COVID-19 would need to be conducted in order for this to change.
It was reported by RNZ as a quote from a MoH spokesperson, that there is not sufficient evidence to suggest that lower dosing will mitigate adverse reactions to the vaccine. It is correct that no trials have been conducted into reactions to lower dosing for pwME. However, in studies that have been conducted into fractionated dosing, reduced doses appear to reduce reactogenicity (adverse side effects).
ANZMES does not provide medical advice or opinions as an organisation, the information provided above is a summary of expert advice and government information. This is so that the ME/CFS community can be informed of all sides of the situation, and can therefore make decisions based on their own individual circumstances. As always, this should be done in conjunction with the individual’s usual medical professional(s).
ANZMES Preliminary survey findings
- Introduction
- Respondents
- Functional capacity (pre-vaccination)
- Vaccination rates
- Pattern for capacity and reaction
- First dose reaction and duration
- Second dose reaction and duration
- Vaccine effects on state of illness/wellness
- Clinical care
- Caregiving
- Fractionated dosing interest
- Antihistamine usage
- Reasons for not being vaccinated
- COVID-19 / Long COVID
- Duration of illness with Long COVID or suspected Long COVID
- Demographic information
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)
- 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 worsened | Improved | No change | Worsened into relapse | Worsened beyond illness | Not vaccinated | No answer | |
| Part-time work home | 22 | 8 | 7 | 9 | 1 | 14 | 2 |
| Part-time outside house | 22 | 3 | 17 | 14 | 0 | 12 | 2 |
| 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 house | 23 | 6 3 temp | 15 | 18 | 7 | 8 | 7 |
| Bedbound mostly | 2 | 0 | 0 | 3 | 0 | 1 | 1 |
| Bedbound unable to care for self | 0 | 0 | 0 | 1 | 0 | 1 | 1 |
| Overall ME | 72 | 20 | 43 | 48 | 8 | 30 | 20 |
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.
- 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.
- 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%)
ANZMES sponsors NZ Long COVID + ME research
One of the primary objectives of ANZMES (Associated New Zealand Myalgic Encephalomyelitis Society) is to further the cause of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) through the promotion and funding of research into the disease. The global COVID-19 (SARS-CoV-2) pandemic has changed the way the world operates, interacts, and deals with new viruses. Yet the notion of post-viral syndromes is nothing new. People with ME/CFS who remain in a ‘state of dis-ease’ after glandular fever (Epstein Barr/mononucleosis) will attest to this. Likewise, an estimated 30% of people who had COVID-19 infections have not returned to their pre-illness state of health. This rising problem recognised by health professionals worldwide was initially coined as Long-hauler then Long COVID. The World Health Organisation (WHO) recently released a Clinical Case Definition, further acknowledging the problem faced by millions globally.
The current WHO case definition states that:
“Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others which generally have an impact on everyday functioning. Symptoms may be new onset, following initial recovery from an acute COVID-19 episode, or persist from the initial illness. Symptoms may also fluctuate or relapse over time. A separate definition may be applicable for children.”
As previously highlighted in the ANZMES May 2021 press release for ME Awareness Day, there are striking similarities between the symptoms experienced by people with Long COVID and the symptoms experienced by people with ME/CFS. Besides the three mentioned in the WHO definition above, there are also flu-like symptoms (fevers/chills, muscle/joint aches/pains, headache, swollen lymph nodes) and gastrointestinal issues. These symptoms seem common in people experiencing post-viral syndromes, and yet people with ME/CFS and Long COVID experience additional symptoms unique to their conditions. For example, many with ME/CFS also endure autonomic dysfunction (dysautonomia, orthostatic intolerance), neuroendocrine malfunctions (cold extremities, intolerance to extreme heat/cold), immune over-activation (sensory, chemical, and environmental sensitivities) and other symptoms related to neuroinflammation and metabolic dysfunction. Those with Long COVID can be prone to depression or anxiety as a direct result of being chronically ill and may also have organ damage caused by the SARS-CoV-2 virus. Science and medicine still have much to learn about both conditions. For instance, why do some people contract COVID-19 and recover within a few weeks whilst others develop a persisting post-viral condition? Many of those infected in the first wave of the pandemic remained unwell more than 19 months later. Is the virus still present and active in the body or has the immune system gone haywire – stuck in a loop of search and destroy? Why does the immune system malfunction? What clues can the molecular structure of people with ME/CFS provide that may answer these questions for those with Long COVID? How can understanding Long COVID help people with ME/CFS?
These questions and more are the focus of a new study currently underway in New Zealand by co-investigators Dr. Anna Brooks, Senior Lecturer (School of Biological Sciences, Faculty of Science, University of Auckland) and Emeritus Professor Warren Tate (Department of Biochemistry, University of Otago) with Dr. Rosamund Vallings from Howick Health & Medical Centre as the key clinical investigator. ANZMES is pleased to provide partial funding for this research. Seed funding has also been awarded by Dr. Brooks’ department, Faculty, and the Maurice Wilkins Centre, a Centre for Research Excellence. However, most of the funding has been obtained via crowdfunding hosted by the University of Auckland Foundation. This funding avenue is still open and accepting donations: http://bit.ly/3AuTiYN
Photo credit: University of Auckland
Photo credit: University of Otago
Dr. Brooks states “There is an urgent need to improve our understanding of the underlying biomedical mechanisms and immune dysfunction associated with Long COVID and other post-viral diseases. Already research is beginning to reveal the similarities between certain lingering symptoms following COVID-19 illness and ME/CFS. Patient groups are now strongly advocating for biomedical research on Long COVID to be collaborative, multidisciplinary and importantly, draw on the experience of those who have been investigating biomedical causes and mechanisms of ME/CFS.”
The experience Dr. Brooks refers to is that of Prof. Tate, winner of the Rutherford medal in 2010, who has been investigating ME/CFS since 2012, and has identified molecular signatures of ME/CFS. As co-investigators for this new study, Dr. Brooks and her team are conducting immunological studies and Prof. Tate and his team are performing molecular studies of Long COVID and its relationship to ME/CFS. Prof. Tate aims to perform molecular analyses on a subgroup of this study in addition to providing samples from his ME/CFS patient group for analysis of immunological status before and after vaccination. In addition to being an experienced cellular immunologist, Dr. Brooks is also Director of Auckland Cytometry, the core facility which houses the leading-edge technologies necessary to perform these critical analyses.
How will this research benefit the ME/CFS community? Since a certain percentage of people with Long COVID symptoms also fit the diagnostic criteria for ME/CFS and many go on to receive this diagnosis as well, the samples analysed as part of this study will be beneficial in tracking early onset ME/CFS in comparison to Long COVID. It is hoped that the researchers will be able to identify key markers of immune dysfunction, especially as a percentage of samples will be obtained at very early stages of disease. This investigation into the unique immune signature of ME/CFS and Long COVID has the potential to unveil a biomarker specific to these conditions. As Dr. Brooks’ core expertise is with advanced flow cytometry, this research will screen for over 100 immune cell biomarkers which to date supersedes any previously screened for in ME/CFS research. “This will be a world first.” states Dr. Brooks.
ANZMES is proud to play a part in this exciting new research endeavour into ME/CFS and Long COVID and will continue to update the community with news as the study progresses. As always, ANZMES welcomes donations which enable continual contributions towards vital and potentially life-changing research: www.anzmes.org.nz.
ANZMES Long COVID + vaccination survey
We have received many queries from our membership about COVID-19 Pfizer vaccination effects for people with ME/CFS in New Zealand.
To answer these questions confidently and comprehensively we decided to create a self-report survey which asks you about your experience with the vaccine. Whether you’ve experienced mild, moderate, severe, or no effects, we would like to know. If you have chosen not to get the vaccination we would still like you to respond. If you are too unwell to fill out the survey yourself, you can ask someone else to fill it out on your behalf.
This survey also features questions regarding experiences and diagnoses of Long COVID as we seek to understand the prevalence and similarities to ME/CFS.
We hope many will participate in this vital research survey. If you require a survey sent by post, please let us know.
You can fill out the survey here:
https://forms.gle/BYEGhGMuaVoPVTrH6
If you are still unsure as to whether you should get vaccinated or not, please view our Information Sheet with advice our experts can offer thus far: https://anzmes.org.nz/experts-talk-covid-19-vaccine-for-people-with-me-cfs/
Experts talk COVID-19 vaccine for people with ME/CFS
ANZMES asks experts for their recommendations on whether people with ME/CFS (pwME/CFS) should get the COVID-19 vaccine or not.
Dr. Ros Vallings, Howick Health & Medical Centre
COVID-19 can be a severe and debilitating disease which can lead to multi-organ damage and death in some people. If someone with ME/CFS catches COVID-19 it is likely to cause a significant exacerbation or relapse of their ME/CFS symptoms, as has been shown in the UK. Yet those experiencing a heightened immune system may be protected against catching viruses – although there is no guarantee. The Pfizer vaccine that is being administered in New Zealand is well studied and exceptionally safe and provides a high degree of protection. However, as with any vaccine some people with ME/CFS have an exacerbation of symptoms which overlap with the commonly reported side effects of the COVID-19 vaccines. A small percentage of people may have a more severe exacerbation of symptoms. I have many of my ME/CFS patients immunised now and not one has had a bad reaction to date. This may be because they used Dr. Nancy Klimas’ antihistamine suggestions which I recommend. I also provide a prescription for prednisone for patients to use if they get sicker, but it is not to be used long-term, and so far only one patient has needed it. For more information please read the recommendations on Dr. Vallings’ website: http://www.drvallings.co.nz/news-items/covid-19-vaccines
Emeritus Professor Warren Tate
I’m a strong advocate for vaccination of any family household member who is not health compromised as this provides protection for the unvaccinated, however I propose a cautious approach for all people with ME/CFS. This is because although the predictive analyses of immunologists might suggest the risk of ongoing relapse (of ME/CFS symptomatology) is small, the patient self-reporting suggests the risk is significant. For example if the person with ME/CFS experiences severe food allergies, chemical hypersensitivities, is prone to frequent debilitating relapses and has a significant compromised level of activity, then I would suspect a much higher risk in comparison to pwME/CFS who do not have these extra dimensions of the illness. In two international studies that came across my desk in regards to the Pfizer vaccine (administered here in NZ) after one dose, 10% reported severe effects on ME/CFS, 40% had mild-moderate effects and 50% had no effects. After the second dose, again 50% had no significant effects, yet nearly 30% had severe effects for at least one month, and 20% had moderate effects. Another study has reported 30% severe effects after the first dose. Anecdotally, of the three women in my university group who had the vaccine, one required hospitalisation for IV fluids after 2 weeks of being severely affected, another had two weeks of a moderate relapse and the third woman had no significant side effects. This seems to mirror the international patient reporting of the much larger groups, and made their results seem genuine to me. I believe therefore that I cannot provide a blanket recommendation for or against the vaccine, but rather believe that each individual should weigh up the decision based on their personal ME/CFS history. If pwME/CFS decide to vaccinate then I would suggest following Dr. Klimas’ antihistamine protocol.
Dr. Nancy Klimas, Nova Southeastern University
COVID kills people. It kills people with over-activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk for an ME relapse with these hyper reactive vaccines, you have to weigh the possibility of an ME relapse against the risk of death from COVID-19. For more information and for advice for people with mast cell activation syndrome visit: https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html
In conclusion from our experts
There is not a definitive answer about whether pwME/CFS should or should not get the COVID-19 vaccine. As the condition is highly individualised, so too, is the response to the vaccine. Some have no effects, some only the expected immune response, some experience improvement of symptoms, and some a worsening of symptoms or a relapse. So what is appropriate for the individual is best considered in conjunction with your GP or specialist who has access to your personal medical history.
Should you choose to vaccinate
Center for Disease Control (CDC) states that people with ME/CFS or fibromyalgia should rest for several days before and after the vaccine, as anecdotal information shows that symptoms can resurface while the immune system is activated. The CDC provide information on what to expect before and after your vaccine: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html
Dr. Lucinda Bateman, Bateman Horne Center states that pwME/CFS should be rested and stable prior to the vaccine, and plan on resting/relaxing for at least 72 hours afterward. Supportive care will include anything you usually do for flu symptoms, PEM, allergy flares, worsened orthostatic intolerance, etc. If anything, including a vaccine, makes you sick enough that you are unable to maintain adequate fluids and nutrition, or results in fluid and electrolyte losses (sweating, diarrhea, etc), it is always appropriate to seek IV fluids as a primary intervention.
Antihistamine Usage
| Dr. Klimas suggests that before the vaccine, make sure you are taking enough antioxidants, particularly NAC or glutathione and CoQ10. Take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. Please note: that if you take the vaccine you should take the whole recommended dose, and the current vaccine Pfizer should be administered twice. As always when dealing with medications and supplements please only do so under the direction of your General Practitioner or Medical Professional to ensure correct dosage administration and to avoid contraindications with your existing medications and personal medical history. |
ANZMES is currently running a self-reporting survey of vaccination effects for pwME/CFS in NZ and will produce the results as soon as possible. We hope many will participate. If you require a survey sent by post, please let us know. https://forms.gle/BYEGhGMuaVoPVTrH6
ANZMES AGM – Saturday 6th November 2021
All are welcome to ANZMES AGM to be held via ZOOM this year, Saturday 6th November starting at 1pm.
Featuring guest speaker Dr Ros Vallings speaking on the latest research and Dr Sarah Dalziel speaking about pain management. Dr Warren Tate will also be on hand to answer any of your questions.
Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).Details below 
https://zoom.us/j/96688928362…
Meeting ID: 966 8892 8362
Passcode: 572263
ANZMES STATEMENT LIGHTNING PROCESS 13 October 2021
There are some therapies which are commercially based, and they come under many names. Lightning Process is one that has been widely known. This is a psychological approach based on neurolinguistic programming, a technique that may have benefits for those who are experiencing depression or anxiety.
Claims have been made that the Lightning Process is a cure and some have said it did cure or significantly help them, but as yet no scientific trials have been done with a group selected from stringent ME/CFS or Long COVID research guidelines. It is possible responders may have conditions other than ME/CFS or Long COVID.
We are concerned by its promotion of it as a ‘cure’ for ME/CFS and Long COVID. At present this is not scientifically proven. We have received reports from those who have spent a great deal of money to try this or similar treatments who have made no improvement, have not been cured or have relapsed severely. The guilt experienced by those who are not cured can be devastating.
On 27 September 2017, the ME Association in the UK published this article on their website:
https://meassociation.org.uk/2017/09/me-association-statement-lightning-process-and-smile-trial-in-young-people-with-mecfs-19-september-2017/
The following is a quote from Dr Charles Shepherd, medical advisor to the ME Association:
“‘The Lightning Process’ is not a treatment that we endorse or recommend for people with ME/CFS. “Patient evidence, gathered from our members over many years, indicates that some people who have gone through the LP try to make rapid and unrealistic improvements in their physical and mental activity levels. However, this is followed by a relapse or significant worsening of symptoms. Others who have gone through the LP programme report that they have spent huge amounts of money with no obvious benefit. It may well be that there are some people with a general fatigue state, resulting from stress, emotional or psychological problems who could benefit from a ‘mind over matter’ entity and not to be confused with ME/CFS. There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.”
Since Dr Shepherd wrote this statement, there has been even more robust scientific research into ME/CFS as a neuro-inflammatory disease. One might do well to remember that multiple sclerosis was once seen as a kind of ‘hysteria,’ until MRI machines were able to identify the lesions associated with this disease on the myelin sheath. Research into the biomedical causes and potential treatments of ME/CFS and Long COVID is proceeding at a rapid rate and new therapies are being developed, including the possibility of treatment through using existing medications.
Along with providing support, it is the aim of ANZMES to provide sufferers of ME/CFS and Long COVID with accurate and up-to-date medical information. We encourage all patients, medical practitioners, family members or the general public to contact us with any questions you may have.
Associated Myalgic Encephalomyelitis Society of New Zealand, Inc.
Update – National Institute for Health and Care Excellence (UK) published revised guidelines on October 29, 2021. In this revision, NICE stated that the Lightning Process should not be offered as a treatment for people with ME/CFS (point 1.12.27 of the recommendations) as it could potentially cause harm. For more information visit: https://www.nice.org.uk/guidance/ng206/chapter/Recommendations
Long Covid Gains Official Recognition – Expert Reaction
Friday, 8 October 2021, 11:24 am
Press Release: Science Media Centre
Long Covid now has a formal definition – setting out agreed symptoms and timeframes to help spot the common post-Covid condition.
The World Health Organization’s case definition aims to help doctors across the world to assess and diagnose long Covid. The illness affects more than 1 in 3 people who have had Covid-19 disease, according to a recent study.
See below for the WHO’s long Covid definition.
The SMC asked experts to respond.
Dr Anna Brooks, Cellular Immunologist and Senior Research Fellow, Maurice Wilkins Centre, University of Auckland, comments:
“It is encouraging to see that a case definition for Long COVID – or “Post COVID-19 condition” – has been released by the WHO. This was developed as a collaborative effort by key stakeholders, including both patients themselves as well as patients who are researchers, highlighting the importance of including those with a lived-experience of having had COVID-19 and the associated persisting condition.
“We hope that by having a clinical case definition, that more patients will be listened to, and taken seriously when they seek the medical care they so desperately need. It is incredibly distressing to hear that many of those that meet this criteria here in Aotearoa have given up seeking medical care due to the trauma of being ‘gas-lit’, or dismissed by their doctors.
“This, in part, may also be due to the similarities that Long COVID has with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), another poorly-understood and often dismissed condition that can occur following viral infection. ME/CFS and Long COVID affects millions of people worldwide, yet there are no diagnostic tests or effective treatments, and clinical guidance remains inconsistent or obsolete. We hope that the international attention on Long COVID, including the announcement of a clinical case definition, will result in all post-viral conditions being taken seriously so that medical care and treatments can be developed once research is undertaken to address this global health burden.
“Vaccination will undoubtedly lower the burden of Long COVID. However, just as vaccines aren’t 100% protective, we know that Long COVID can also occur following a breakthrough (symptomatic) infection. Fortunately, these cases remain low. The study showed that in the minority of people who got Covid-19 despite being vaccinated, the odds of developing symptoms lasting longer than four weeks were cut by 50%. This is compared with people who were not vaccinated.
“So the message is clear, the odds of getting Long COVID following two vaccine doses is very low. Given Long COVID does not discriminate and can affect all ages, it is even more critical that we protect those who are most vulnerable – those who cannot be vaccinated and children who are not eligible – by ensuring we reach high vaccination rates.”
No conflict of interest declared.
Dr Stephen Ritchie, Infectious Diseases Specialist and Senior Lecturer – Clinical, Molecular Medicine and Pathology, University of Auckland, comments:
“One of the common pieces of misinformation about COVID-19 is that it is “just a bad cold” and “nothing to worry about”. While for many adults COVID-19 is likely to only cause a self-limiting influenza-like illness, the high number of deaths caused by COVID-19 around the world clearly demonstrates that COVID-19 is much more than a bad cold. Furthermore, recent research demonstrates that a high proportion of people with COVID-19 will suffer post COVID-19 (a.k.a. long-COVID) symptoms.
“Post-COVID can be devastating and is characterised by a number of severe symptoms: fatigue, “brain-fogging”, abdominal symptoms, depression, chest pain and breathing difficulties, to name a few. A recent study from Oxford University, UK, found that more than 1 in 3 people had these symptoms between 3 and 6 months after they’d recovered from their initial COVID-19 illness! Many New Zealanders already suffer from this problem and many, many more will in the future.
“There is a huge list of things that require further study for post COVID-19. High on that list is the need to find out why this happens for so many people, but not others; how to prevent it happening; and how to best help those who have post COVID-19.
“The WHO has recently increased recognition of long-COVID through a series of webinars, and today’s presentation presented information that helps to define cases of post COVID-19 (see definition below), to improve the consistency of future research internationally and to improve advocacy for people with post COVID-19.
“At present, the best way to avoid post COVID-19 is to get fully vaccinated – another UK study showed that vaccination reduced the risk of having ongoing symptoms after one month by a half.”
No conflict of interest declared.
Emeritus Professor Warren Tate, biochemist, molecular biologist and ME/CFS expert, Brain Health Research Centre, University of Otago:
“The World Health Organization (WHO) has announced a definitive clinical case definition for what has been known as Long COVID, a condition arising as an ongoing disease from the virus of the current pandemic. It is officially now named ‘post COVID-19 condition’, although I suspect the ‘street name’ will persist.
“This is a positive step in that now all research and clinical intervention will be working with a common clinical case definition for study recruitment and therapies. This has not been the case for the sister disease – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – where over 20 clinical case definitions exist, which means it is difficult to compare international studies if they have used different criteria to recruit patients.
“The case definition was determined after an iterative process involving contributions from patients, patient researchers, external experts and WHO staff, with a reasonable gender balance, albeit slightly skewed towards males. This is important since post COVID-19 condition occurs more in women of middle age.
“The diagnosis applies to individuals with a history of probable or confirmed Covid infection, usually 3 months from the onset of COVID-19, with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, and cognitive dysfunction. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.
“There are some slightly puzzling aspects to this announcement. Long COVID has generally been accepted to be a group of post-COVID conditions (e.g. specific organ effects, post-traumatic stress disorder, and perhaps the most common, post-viral fatigue syndrome), although not with universal agreement. Here, the definition has been derived for the group and so the patients may still be diverse, requiring differing strategies for improving their health. The definition itself may eliminate some of the subgroups while including others. In reality, the symptoms chosen for the definition will largely identify the subgroup with post-viral fatigue.
“In fact, as defined here the condition’s features are incredibly similar to its sister disease ME/CFS and the WHO definition almost mimics a clinical case definition for that disease. In that sense it is surprising that people who have been suspected but not formally diagnosed with COVID-19 would be included within the definition. These could be people with ‘classic ME/CFS’ that has arisen from an alternative source.
“Although the purpose is admirable – to derive a common case definition that could be used worldwide and focuses wholly on COVID-19, it is surprising there was no clear reference in the WHO’s release to how similar this is to the clinical case definition for ME/CFS, and how these diseases should now be considered together.
“This seems to me a lost opportunity that would benefit not only those suffering from post-COVID 19 condition – but also those suffering with ME/CFS – who for many years have been out of the spotlight and largely ignored, despite their estimated numbers worldwide being equivalent currently to those predicted to have post-COVID 19 syndrome – about 20 million people worldwide. ME/CFS is very briefly mentioned under the little-used name ‘Systemic Exercise Intolerance Syndrome’, which has little public or even patient use.”
No conflict of interest declared.
