anzmes

Petition: Reclassify ME/CFS to Disability

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Join us

Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is calling for ME/CFS to be reclassified as a disability.

We urge you to to pledge your support for this change.

People with this debilitating condition face a barrier to support under the current classification of “chronic illness” and as a result experience poor quality of life and health inequity. With increasing numbers of people with Long COVID (LC) being diagnosed with ME/CFS the existing support through nonprofit organisations is set to become unmanageable, with case numbers still rising.

With the new Whaikaha – Ministry of Disabled People still in development ANZMES sees that this is a timely opportunity to move forward with this long overdue change.

ANZMES President, Fiona Charlton says, “it is vital for ME/CFS and LC that this access is improved. “Many people have symptoms that are so severe that they struggle with daily tasks like showering, making a meal and are bedbound or require a wheelchair. “This growing community of chronically ill people deserve better treatment and urgently need more access to financial support and health services with acknowledgment that their illness is disabling.”

Photo Credit: Martyna Reynolds
Photo Credit: 123rf

Despite the symptoms of ME/CFS meeting many of the definitions for disability, the illness is not categorised as a disability in New Zealand for the purpose of health-related funding and support.

The Human Rights Act 1993 states that disability can be defined as:

Physical disability or impairment: physical illness: psychiatric illness: intellectual or psychological
disability or impairment: any other loss or abnormality of psychological, physiological: or anatomical
structure or function: reliance on a guide dog, wheelchair, or other remedial means: the presence in the
body of organisms capable of causing illness.

Reclassification will lead to real improvements in quality of life for those in need. Some people with ME/CFS become ill and never return to their pre-illness capabilities – this makes the condition life-long. ME/CFS patients require home help, housing support, financial support, and counselling access. Many people, following COVID-19 infection, are being diagnosed with ME/CFS and also require ongoing support services.

Photo Credit: FitnessForThisAbility.com
Photo Credit: Glide.com.au

Reclassification of ME/CFS to disability would result in:

  • legitimisation and validation of a person living with ME/CFS as a disabled person, and a protection of their rights as a disabled person,
  • easier access to governmental financial support and ministry services,
  • increased access to social services,
  • access to need assessments as a recognised disabled person,
  • access to home-help support and services, including mobility aids, and grants for home modifications for wheelchair use,
  • access to free immunisations on a voluntary basis,
  • increased level of care and support through social services and educational institutions.

What is ME/CFS?
A chronic illness involving overwhelming ongoing fatigue, ME/CFS is often triggered by a viral illness. The condition causes a variety of symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.

Who are ANZMES?
ANZMES has been providing information, building awareness, funding research, and advocating for people with ME/CFS for the past 42 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 urges you to join us in supporting this petition by signing and sharing with your networks: https://www.parliament.nz/en/pb/petitions/document/PET_125649/petition-of-associated-myalgic-encephalomyelitis-society

ANZMES backs World ME Alliance position

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– no endorsement for Lightning Process for ME

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) supports the new position paper on the Lightning Process by the World ME Alliance and does not endorse the Lightning Process for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). 

The Lightning Process is a programme loosely based on concepts of neuro linguistic programming (NLP) and cognitive behaviour therapy (CBT) that is set up commercially and currently marketed as a cure for ME/CFS. This claim is not backed by scientific evidence and ANZMES shares the view of the World ME Alliance that the promotion of this programme is likely to do harm.

The National Institute for Health and Care Excellence (NICE), in the UK, revised their guidelines for the diagnosis, treatment, and management of ME/CFS stating that the lightning process should not be used as a treatment and they no longer recommend CBT. These changes reflect a shift from an outdated perspective that ME/CFS was a psychological condition and follows evidence from over 200 studies showing poor efficacy for this treatment approach.

ANZMES President, Fiona Charlton says, “there is a growing body of evidence that shows that ME is driven by physiological changes not psychological ones and telling people that they can talk themselves out of this condition, within three days, could be very harmful.

“We know that if people with ME ignore their symptoms and push themselves this can make things worse, sometimes to the point of needing hospital care.”

ANZMES agrees with the World ME Alliance who highlight in their statement that people with ME/CFS are vulnerable to exploitation due to a lack of effective treatment where programmes like the Lightning Process are just filling this void.

People living with Long COVID are also being drawn into this treatment as this is now an extension of their claims to cure ME/CFS.

Other concerns with the Lightning Process include a bias in efficacy studies, including conflicts of interest, a reported secrecy where participants are told not to speak about the programme or their symptoms and a level of shame and guilt for those who do not recover within the three days of treatment.

Charlton says, “we want to ensure that if we are endorsing a treatment for ME that robust evidence supports efficacy and this is just not the case with LP. 

“What we do know is that a treatment approach that is focussed around symptom management is shown to help with the relapsing nature of ME.”

ANZMES acknowledges that neurological symptoms, such as depression and anxiety can be a part of ME/CFS and may benefit from supportive therapies but people have the right to unbiased, impartial information when being offered these treatments.

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The Lightning Process was developed and trademarked by British osteopath and hypnotherapist Phil Parker.

ANZMES has been providing information, building awareness, funding research, and advocating for people with ME/CFS for the past 42 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.

Position Statement World ME Alliance

NICE Guidelines

Contact ANZMES for more information

First World ME Day

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image of the world from space, with text The first ever World ME Day May 12th 2022 worldmeday.org

First World ME Day and theme launched by alliance members

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.

Read More: here

image of a lightbulb inside a chalk drawing of a thought bubble with the text #learnfromme world me day

What should the world #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.

Read more: here

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 

Doctor Ros Vallings at the Public Meeting in Dunedin Colquoun Theatre 22 Sept, 2014.

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Ros trip
Dr Vallings being introduced at the meeting.

Ros2
Dr Ros Vallings lecturing to the crowd.

Debbie
Debbie, ANZMES manager with resources ready to give out.

Doctor Ros Vallings lectured at the Colquhoun Theater in Dunedin on the 22nd September, 2014 to make a Podcast for Medical Students education at a public meeting.
Resources were given to Doctors and Medical Students who attended plus members of the public. There were over a large crowd who turned up on a cold snowy day to listen to the latest information from Ros.

ANZMES AGM 2nd November 2014

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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).

ME Day

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ME/CFS day is on the 12th of May.
This date was picked as it was the anniversary of Florence Nightingales Birthday.
Florence was thought to have had ME/CFS in the later  years of her life.
To celebrate ME day ANZMES has sent resources including latest Physicians booklets
Childrens Booklets and posters etc to all the Support Group through NZ.

An ANZMES survey of how ME/CFS impacts on sufferers has been compiled and thanks to Don Baken for his help with this. Massey University has helped with a media release of the survey.
Dr Ros Vallings is speaking on Monday Morning on TV about ME/CFS and the ANZMES survey.
Articles are in local newspapers that have been put in by support groups up and down NZ.
Here are some articles from the ME day release.

Phoenix Rising

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