ANZMES speaks on RNZ about reclassification

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


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

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


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

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

Put simply:

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

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

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

*NASC – Needs Assessment Service Coordination.

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

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

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

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

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

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

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

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

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

This was NOT implemented by government.

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

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

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

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

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

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


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

ANZMES Preliminary survey findings

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%)

Massey University is looking to recruit volunteers

Dr Lynette Hodges from The School of Sport and Exercise at Massey University is looking to recruit volunteers with ME/CFS

INTRODUCTION TO REPEATED EXERCISE STUDY

Dr Lynette Hodges from the School of Sport and Exercise at Massey University is looking to recruit volunteers with Myalgic Encephalopathy/Chronic Fatigue Syndrome. The study is assessing responses to repeated exercise testing in individuals with ME/CFS, Multiple Sclerosis and healthy age matched controls. The design of the study includes physiological exercise testing validated by Staci Stevens in California and blood analysis to be used in research by Professor Warren Tate (Otago University) as he searches for a biomarker. Tests will include an arterial stiffness assessment, providing blood samples, brief neuropsychological tests, exercise testing which will last for approximately 12 minutes on a cycle ergometer and an exercise recovery questionnaire. All these tests have been used safely with people with ME/CFS in the past. Dr Ros Vallings, Staci Stevens, Dr Don Baken and Professor Warren Tate have all been involved in the design of the study. It is an exciting opportunity for individuals with ME/CFS to take part in a cutting edge piece of research within New Zealand, which will hopefully answer some of the many unanswered questions about the unique nature of the fatigue. When the results have been analysed participants will be given their individual results if they request these. People interested in participating in the study will be asked to complete the DePaul symptom questionnaire developed by Professor Leonard Jason and then, dependent on their results, will be invited to complete the series of tests at Massey University, Palmerston North campus. More information about the study can be found at the following link.

Massey University Information

ANZMES is supporting Professor Warren Tates Research group that is based in the University of Otago, Biochemistry Department.

TATE GROUP RESEARCH SUMMARY:
Diagnostic Test
• Our goal is to develop a diagnostic blood test for myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS).
• There is no specific diagnostic blood test or effective treatment currently available
• This highlights the urgent need to find specific biomarkers to differentiate ME/CFS from other treatable disorders involving fatigue and to expedite the search for specific therapies.
• For development of a simple and effective blood diagnostic test we are targeting the antiviral immune pathway that is chronically activated in ME/CFS patients.
• The aim of our work is to create a simple informative immunological diagnostic test for ME/CFS.
• a pilot study with 10 ME/CFS patients and 10 matched controls is planned, and then with a larger study of >30 patients.
• If the targeted molecules prove to be successful biomarkers the assay would be developed into an ELISA format suitable for use in diagnostic laboratories.

Therapeutic targets
• We aim to analyse thousands of molecules in the plasma and in the white blood (immune) cells of our recruited patients to determine which molecular pathways in the body are affected
• The human genome activity of patients is to be assessed to look for the presence of new and known viruses compared with age and gender matched controls
• It is hoped that this will determine whether all ME/CFS patients have the same ‘signature’ of disturbed pathways or whether there are subtypes of the illness with different disturbances
• It is planned to follow recruited patients through relapse and recovery to understand what molecular pathways trigger the relapse
• This analysis will reveal more specific biomarkers for ME that can be used for diagnosis of the illness
• Ultimately we hope it is possible to create a diagnostic plate for ME/CFS that distinguishes it from other hard to diagnose chronic syndromes that have remarkably similar symptoms like fatigue, gastrointestinal upset, -for example, irritable bowel syndrome, endometriosis
• Identifying disturbed molecular pathways has the potential to highlight therapeutic targets so patient support to manage the illness might be enhanced

BACKGROUND:New Zealand has an estimated 20,000 people affected by myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), with a significant estimated economic cost of $30,000 – $40,000/year/affected family. Currently, patients are supported by the Associated NZ ME Society (ANZMES),and by individual support groups throughout New Zealand like MEISS in Otago and Southland. Medical practitioners find diagnosis and management of the syndrome challenging. Auckland-based GP and collaborator, Dr Rosamund Vallings, has managed many patients with this syndrome for over 20 years and has seen > 5000 ME/CFS sufferers in her practice. She was part of an international team that established new clinical criteria for ME/CFS (ME International Consensus Criteria)in 2011.These point out that the underlying pathophysiology of ME is so complex that previously some patients with other separately treatable conditions such as anaemia, hemochromatosis, diabetes, cancers, HIV/AIDS, and vitamin B12 deficiency have been misdiagnosed and included in the ME/CFS cohort. A 32 page booklet has now been produced by the international IACFS/ME organization to aid diagnosis for GPs. Dr Vallings has published a comprehensive book on the syndrome in September 2012.Aimed at both patients and GPs,it outlines the abnormalities in many body systems,additional to the well-recognized neurological and immune dysfunction, and emphasizes strategies to manage the illness in the absence of any diagnostic test or effective therapies. A recent International ME Research Collaboration conference emphasized as a priority the need for developing and validating biomarkers specific for ME to help in an accurate diagnosis.

ANZMES AGM 2nd November 2014

Australian Paediatrician Kathy Rowe
Australian Paediatrician Kathy Rowe

ANZMES AGM will be held on the 2nd November at 1pm at the CCS resource Centre in Royal Oak. Guest Speaker will be Dr Kathy Rowe a top Australian Paediatrician. After the AGM Kathy will be visiting many New Zealand main centres to lecture to paediatricians and Medical professionals.

Over the past 44 years, Kathy Rowe has achieved outstanding national and international recognition for her work in adolescent health. She is widely acclaimed as a caring, dedicated consultant physician, in the Centre for Adolescent Health at Melbourne’s Royal Children’s Hospital. She has also held academic appointments in the University of Melbourne’s Department of Paediatrics, involved in teaching, research and clinical work.

She is an expert in the area of chronic fatigue syndrome, having worked tirelessly and championed its cause when it was not fashionable. Prof Leonard Jason referred to her work as “the most elegant and important in the field” and stated that “the entire field has benefited from the precision and rigor of her methods.”She worked hard on the international committee establishing the paediatric case definition and diagnostic criteria for CFS/ME (2006).

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