ANZMES Preliminary survey findings

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%)

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

Dr Anna Brooks in her laboratory
Dr. Anna Brooks
Photo credit: University of Auckland
Prof Warren Tate in his lab
Emeritus Professor Warren Tate
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 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, but has in some cases been rebranded. At present, this may be called The Switch, Empower Therapies or Monarch Life in Aotearoa/New Zealand. 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/Switch/EmpowerTherapies/Monarch Life 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.

© Scoop Media

New research shows ME/CFS is not psychosomatic

News articles regarding Professor Warren Tate’s research that shows physiological and biochemical changes and dysregulation in people with ME/CFS compared to healthy controls. Read more here:

https://www.stuff.co.nz/life-style/well-good/300181308/kiwi-researchers-prove-chronic-fatigue-syndrome-is-not-psychosomatic

https://www.nzdoctor.co.nz/article/undoctored/proof-chronic-fatigue-syndrome-not-psychsomatic

Photo Credit: University of Otago.

Prof. Tate: ME/CFS is not psychosomatic

University of Otago researchers have proved in two studies that chronic fatigue is not psychosomatic, despite the widely held belief.

The Panel on RNZ speak to Emeritus Professor Warren Tate, from the University of Otago’s department of Biochemistry.

https://www.rnz.co.nz/national/programmes/thepanel/audio/2018776634/chronic-fatigue-is-not-psychosomatic-study

Richie Barnett and Prof. Tate on Breakfast

Watch Jenny-May Clarkson interview Richie Barnett and Professor Warren Tate on Breakfast (via Facebook Watch).

New Answers for People Suffering with Chronic Fatigue – A new study on Chronic Fatigue Disorder (ME/CFS) is set to help health services better support those living with the disease. While it’s often labelled as depression or made up symptoms, the research confirmed ME/CFS is not a psychosomatic illness. Former rugby league football captain Richie Barnett shares his story with chronic fatigue this morning, along with Professor Warren Tate who has undertaken extensive research.

https://www.facebook.com/Breakfaston1/videos/1001270763701266

Lightning Process/Switch

There are some therapies which are commercially based, and they come under many names.

The Lightning Process is one that has been widely known, but it has in some cases has been rebranded under other names and at present is called “The Switch” in New Zealand.

This is a psychological approach based on neuro-linguistic programming, a therapy which

may have benefits to some people with ME/CFS, especially those who have depression or anxiety. 

There have been claims made that the Lightning Process/Switch 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 research guidelines. It is possible responders may have conditions other than ME/CFS.

We are concerned by its promotion of it as a “cure” for ME/CFS. 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, were not 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:

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’ retraining approach such as this. Such fatigue states are a separate 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/FS 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 of the spinal cord. 

Research into the biomedical causes and potential treatments of ME/CFS is proceeding at a rapid rate and new therapies are being developed, including the possibility of using existing medications to treat the illness.

Along with providing support, it is the aim of ANZMES to provide sufferers of ME/CFS 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

info@anzmes.org.nz