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ANZMES Long COVID + vaccination survey

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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

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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

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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

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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

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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.

© Scoop Media

Hāpai Access Card

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The Hāpai Access Card was created as a means to communicate the access requirements for people living with disabilities.

The definition of disability in New Zealand used by the government is any “self-perceived limitation in activity resulting from a long-term condition or health problem lasting or expected to last 6 months or more and not completely eliminated by an assistive device.”

In order to cover a wide range of conditions and impairments Hāpai Foundation defines disability as: “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities.”

The Hāpai Access Card is designed to increase access in the community, increase participation by people with disabilities in the community, and to normalise access for people with disabilities. It is aimed at being a bridge between the business and disability community. It follows the Social Model of Disability in which the understanding is that people are only disabled by barriers in society not by their impairment or difference. For example barriers can be physical such as buildings not having ramps or accessible toilets or attitudes towards difference such as assuming that people with disabilities can’t do certain things.

The Hāpai Access Card provides an easy way for the card holder to show a business the barriers they face, and for the business to respond.

The card costs $30 for 3 years. To get the card a person has to show they have a disability and have their barriers assessed. This is done by a GP, or registered NGO.

The card can feature 9 icons representing the barriers that people face (difficulty queuing/standing, wheelchair, difficulty with distances, urgent toilet access, assistance dog, assistance person, visual information difficulty, audible information difficulty, other relevant needs.

This card is therefore a mechanism by which customers can alert business staff to the barriers they may face when purchasing a product or experiencing a service. This enables businesses to address and remove barriers for a more inclusive shopping experience.

Currently the businesses registered are largely in the Canterbury region, but the goal is to introduce Hāpai Access card nationwide.

For more information visit: https://www.hapaifoundation.org.nz/

Pathways to Improvement online program

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Pathways to Improvement is a step-by-step guided program for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Environmental Sensitivities. This program was created by Dr. Eleanor Stein, who has 30 years of both personal and professional experience with these difficult-to-treat biomedical diseases/illnesses.

According to Dr. Stein “After years of illness and failed attempts at improvement, many with ME/CFS, FM and ES lose hope that improvement is possible. Not so. It is possible to improve your energy, sleep, thinking and pain, to be more joyful, more resilient and to be able to enjoy more of the things you love.”

About Eleanor Stein MD, FRCP(C)

“As a medical specialist in psychiatry, I have dedicated my practice to ME/CFS, FM and ES for the past 20 years. I got into this field after developing ME/CFS, FM and MCS in 1989. My health symptoms limited my ability to work and function every day for over 28 years. Then about three years ago many of the symptoms, including disabling fatigue, lifted. Why do I think this happened?

Over the past seven years I have been intensively studying and practicing methods of change based on neuroplasticity. Many people, including myself, who stabilized their health with self-management are reporting improvements with these new strategies. The science of neuroplasticity teaches us how to create change. By sharing what I have learned with you, I hope your pathway to improvement will be faster than mine.

People tell me that the experience of being in a group with others who “get it” can be life changing.”

The online course consists of 8 fortnightly 1.75 hour live zoom sessions plus 1 Q&A session starting May and October each year). The goal of the course is to provide tangible practical steps that people with ME/CFS, FM, & ES can do to experience improvement in their lives through symptom reduction and enhanced quality of life. Topics include:

  • Biology of Change – which covers neuroplasticity aka the ability for the brain to retrain/learn/change
  • Diagnosis
  • Sleep
  • Energy and activity
  • Diet
  • Pain
  • Environment
  • Emotions

For each topic there are several short videos and an exercise that is meant to be carried out over the two weeks prior to each live session. The exercise is a form of self-monitoring to increase self-awareness, identify patterns or triggers, and provide insight into areas that if altered, may result in change to symptoms and the lived experience. For example, turning off electronics an hour before bed can improve sleep. There is also a manual “Let your light shine through” written by Dr. Stein.

The live sessions involve a short recap by Dr. Stein of the most important points from the course videos. There are breaks and opportunities to interact with other course attendees in breakout rooms with questions to answer and discuss together. The 3 moderators then present a summary of discussions back to the whole group. Finally the chat is opened up for questions which Dr. Stein answers.

An ANZMES executive committee member attended the May 2021 online course so that ANZMES has a first-hand experience with it. We do not recommend treatments however we believe Dr. Stein to be a reputable health professional. We believe this program may be ideal for the newly diagnosed, for those who have not previously come across symptom management techniques, or for those that have tried a few things and feel stuck and are seeking a fresh take. Dr. Stein has a wealth of knowledge and experience, having worked closely in group and 1-on-1 sessions with people with ME/CFS for over two decades, and teaching self-management strategies that worked for her. Dr. Stein’s empathy, insights, and expertise are invaluable.

It’s roughly $NZD335.00 ($CAD279 + GST).

The next course is October 26, 2021 and you can find out more here: https://www.eleanorsteinmd.ca/pathways

NOTE: ANZMES does not benefit from registration in the course.

ANZMES does not take responsibility for the outcomes experienced by those who choose to partake in the Pathways to Improvement online program.

ANZMES does not recommend any treatments and it is stressed that the diagnosis of ME/CFS relies on clinical description/presentation and on exclusionary medical testing. It is imperative to seek qualified medical advice for evaluation. Any advice, either explicit or implied, is not intended to replace qualified medical advice. ANZMES does not accept any responsibility for any treatment undertaken by readers of this website or for any error or omission in connection with information shared here.

Long COVID Gains Official Recognition by WHO

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The World Health Organization (WHO) has announced a definitive clinical case definition for what has been known as Long COVID, to help doctors recognise and diagnose the estimated 1 in 3 people affected by this post COVID-19 ongoing disease.

The WHO definition of Long COVID is:  “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.”

Science Media Centre gets Expert Reactions to the case definition. Read what Dr. Anna Brooks and Emeritus Professor Warren Tate have to say, here:

Long Covid gains official recognition – Expert Reaction

Countdown Priority Assistance

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Good news for online shoppers at Countdown, ANZMES has set up a priority assistance code for all of our members to use. Please see the instructions below:

“Countdown supermarkets have been very busy these past few weeks and there has been high demand for our online shopping service. We are about to announce how we will be working to prioritise vulnerable customers who want to use our online shopping service. We know that your members will be some of these customers and we want to help you help them. Please ask your members to register for Countdown online Shopping at shop.countdown.co.nz. After that they will need to complete this form:https://shop.countdown.co.nz/…/content/priority-assistance

Please enter the code ANZMES in the field where it asks for a Super Gold Card number so we know they are a member of your organisation and we can work to filter them through the process as quickly as possible. If they have a Super Gold Card they can enter that number too, after the code.Once we’ve processed their application they will receive an email to confirm that they have been accepted into the Priority Assistance group. What this will mean is that when they shop online they will see dedicated delivery time slots on our website that others can’t see subject to availability. These delivery times will be reserved for use by our Priority Assistance customers. There aren’t many time slots at the moment due to heavy demand but we are working to grow capacity and there should be more availability over the next week or so. Priority Assistance customers will still be subject to the same limits as other online shoppers and everything else about the service will remain the same, as it is for other shoppers. All deliveries will be Contactless which means our drivers will just place the groceries on the doorstep, knock on the door and go. They will also send you a text message to let you know your groceries have arrived. If your members have further questions please ask them to visit our website and review the COVID-19 Frequently Asked Questions or have them ask Olive, our Virtual Assistant, that will pop up to chat on our website. They can find Olive at https://www.countdown.co.nz/If they need help with the Priority Assistance application process please call our dedicated number 0800 477 655 or email us at priority@countdown.co.nz. If they need help with anything else they can call our Customer Care team on 0800 40 40 40 but please note that they are very busy and the wait times can be quite long so please only call if it is absolutely essential. We hope this small step will help your members in the coming days as we all go through this experience together.”

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

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