The World ME Alliance, a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations and unify efforts to raise awareness and campaign together on Myalgic Encephalomyelitis (ME). Through collective action, we will step closer to our goal of a world without ME.
World ME Day will build on the incredible efforts of advocates around events, such as ME Awareness Week and Chronic Immunological and Neurological Diseases (CIND) Awareness Day. By focusing on a single day and collaborating across many organisations, we aim to maximise our collective power.
The theme for the first year of World ME Day is #LearnFromME.
ME is a global health crisis – up to 30 million people are living with this disease worldwide, and when we take into account the effect on families, carers and friends too, the impact of this disease cannot be overstated.
But there is much to be learnt from this disease – from the willpower and determination of those living with it, to the incredible advocates working towards change, to an understanding that the most meaningful change will comes from high-quality research.
We want to use World ME Day to reach out to health professionals on a personal basis, build understanding of ME and take another step towards a world that understands ME.
Key facts for health professionals
People with ME have a lower average quality of life than all other diseases they have been compared to, including diabetes, cancers and heart disease.
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.
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.
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.
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
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 malaise
Fatigue
Cognitive dysfunction (brain fog, memory lapses)
Brain fog
Gastrointestinal issues
Gastrointestinal issues
shortness of breath
shortness of breath
Fevers/Chills
Fevers/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]:
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.
