Frequently Asked Questions

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Q: Should I get the COVID-19 vaccine if I have ME/CFS?

A: Written in 2021 based on information from 2020.
It is recommended that people with ME/CFS and/or associated fibromyalgia should strongly consider vaccination for COVID-19.  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, providing a high degree of protection. However, as with any vaccine some people with ME/CFS have an exacerbation of symptoms, that 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. For more information please read the recommendations by Dr. Vallings: http://www.drvallings.co.nz/news-items/covid-19-vaccines

The main advice provided about vaccination for people with ME/CFS or fibromyalgia is to 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

Other useful articles to help you make a decision are:

ME/CFS/FM Experts On Whether to Get Vaccinated – Take II, Plus the Coronavirus Vaccine Improvements Poll and a Roundup on Past Poll Results

and https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html
or https://www.actionforme.org.uk/get-support-now/coronavirus-and-me-cfs/covid-vaccine/

The government has mobilised a new team to support people living with disabilities access transport and get vaccinated in a way that suits their needs. To speak with a support specialist, call the COVID Vaccination Healthline on 0800 28 29 26 for free 8 am – 8 pm Monday to Friday and ‘push 2’ to speak to one of the team.

The call centre is a collaboration between Capital and Coast DHB and Whakarongorau Aotearoa – National Telehealth Service. $1.5 million has been allocated for outreach to people living with disabilities, which is being accessed by approximately 40 groups across New Zealand.

Alternatively, Whakarongorau Aotearoa (formerly Homecare Medical) can be called directly on 09 354 7774. The nurse can provide a liaison service with local DHBs.

It is recommended that any adverse reactions are reported directly to CARM (Centre for Adverse Reactions Monitoring):

https://nzphvc.otago.ac.nz/reporting

Q: My doctor told me that ME/CFS is pyschosomatic – is this true?

A: No. This is an outdated and incorrect theory that arose when the biopsychosocial model of health was used to diagnose ME/CFS. Because a direct biological root cause for ME/CFS could not be ascertained, it was deemed a psychosocial disorder. However more recent research has shown significant physiological manifestations of disease.

Emeritus Professor Warren Tate of the University of Otago states that “Our studies have shown unequivocally this [ME/CFS] is not a psychosomatic illness.”

Other research has discovered:

Visit our links page to watch videos from our YouTube channel for more information on current research.

Q: Is the Lightning Process going to cure me of ME/CFS?

A: There are no scientific trials to suggest this psychological approach will cure ME/CFS. ANZMES does not endorse this form of treatment. It may have some benefit for people with anxiety or depression. See our full statement here: https://anzmes.org.nz/anzmes-statement-lightning-process-13-october-2021/

The best form of management of ME/CFS is outlined by Dr. Vallings here: http://www.drvallings.co.nz/management.html

Q: Should I take low-dose Abilify (Aripiprazole) for my ME/CFS?

A: We too understand the desperation that can exist in this community, as some have failed to improve by using other means to treat their symptoms. At the same time, the use of this drug for ME/CFS is experimental in nature. We encourage everyone to consult with their own doctor, preferably a specialist psychiatrist or psycho-pharmacologist, in order to assess the possible dangers or side effects one might encounter with aripiprazole, even at a low dose. It is also important to consider the possible interactions of any medications one is prescribed.

Dr. Vallings does not intend to prescribe this anti-psychotic for ME/CFS patients, because many of the side-effects mimic the symptoms of ME/CFS and there is insufficient evidence-based research to suggest it has a positive effect on ME/CFS management.

The ME Association UK put out a rapid statement of concern regarding this medication because it poses significant potential risk to health. They state that: “Aripiprazole should be approached with at least as much caution and with as much of a critical eye as we have in the past applied to personal anecdotes and even to research relating to Rituximab for example, or the Lightning Process, and Graded Exercise Therapy.”
Read their statement in full here: https://meassociation.org.uk/2021/05/me-association-statement-aripiprazole-abilify-me-cfs/
The use of any possible medication needs to be a conversation between you and the doctor who prescribes your medication. One size does not fit all.

Q: There was a TV1 news report on April 13th 2021 that suggested that Long COVID as a post-viral syndrome is “a new phenomenon” but isn’t it just like ME/CFS?

A: Post-viral syndromes are not “new.” People living with ME/CFS know this all too well.

Some of the symptoms experienced by those with Long COVID do have similarity to some of the symptoms experienced by those living with ME/CFS. In particular, some shared symptoms are: constant fatigue with post-exertional malaise, “brain fog” (difficulty thinking and concentrating), gastrointestinal issues, flu-like symptoms (fevers/chills), muscle and joint pain, and shortness of breath. Long COVID is diagnosed if a person has not recovered to their pre-illness level-of-health twelve weeks after onset. Some who are still experiencing symptoms six months later meet the criteria for a diagnosis of ME/CFS. However for the estimated 25-35% of people diagnosed with Long COVID, there is a degree of unchartered territory because this particular virus only recently jumped from animals to humans. Therefore the real long term effects of Long COVID are as yet unknown because onset of illness was only more-or-less one year ago for the vast majority, and because COVID-19 has caused multi-organ (lungs, kidneys, heart, and brain) damage in some but not all of those who contracted the virus.

Q: Can you recommend a GP in my local area who understands ME/CFS?

A: We currently do not provide this type of information; however please refer to your local support group as they may be able to help: https://anzmes.org.nz/what-is-me/support/

Q: Is ME/CFS classed as a disability or a chronic illness?

A: Currently in New Zealand, ME/CFS is classed as a chronic illness. However ANZMES is continually advocating for ME/CFS to be classed as a disability.

In the United States being disabled is determined if a person is unable to: “engage in substantial gainful activity by reason of a medically determinable impairment which can be expected to last for a continuous period of not less than 12 months” Comerford and Podell (2019, para.2).[1]

The capacity [2] for attendance and performance at school and work, as wells as daily activities, responsibilities and social interactions are important indicators of (dis)ability. Unemployment in the ME/CFS population varies with symptom severity. In a committee report [3] unemployment rates varied from 35-69% in 13 studies, and job loss occurred for 26-89% of the ME/CFS population studied. Chu, et. al (2019) also found between 40-81% of those with ME/CFS are unable to maintain employment due to fluctuating, disabling symptoms [4]. In a study by Jason et al., (2008) unemployment, government aid, or part-time employment were found to be more likely for those with ME/CFS compared to healthy controls. In addition to income loss, those with ME/CFS were often experiencing increased medical expenses in the search for a definitive diagnosis and treatment [5].

The Social Model of Disability demonstrates how individuals with impairments (problems in body function or structure) are oppressed and excluded, resulting in social, financial, environmental, and psychological disadvantages (Rohleder, 2012) [6]. People with ME/CFS often face difficulties resulting from living with chronic illness, e.g. identity loss, disconnection from social networks, the stigma of ME/CFS being mislabelled as psychosomatic, and difficulty accessing services and medical care [7]. Quality of life is often greatly diminished with areas of normal life being severely affected e.g. marital/familial relationships, financial security, daily routines, hobbies, and stamina [8].

The classification of ME/CFS affects what services are available to those living with the chronic illness and their carers/families. As Joy Turner explains on Carers NZ [9] – she was unable to obtain home help care through Ministry services because of the classification when she needed short-term care for her ill daughter, whilst Joy had surgery. 25% [10] of those with ME/CFS are either house bound or bed bound (the latter occasionally requiring IV drips and 24/7 care). They can’t get access to this care under the current classification, so it often means that family members have to leave their jobs to be fulltime carers, which of course reduces their income but increases their medical expenses.

In a 2020 survey conducted by ANZMES, 93 of 283 respondents reported that they require home help, but only 46 have received it with 13 people being unsatisfied with the service. 35 people have been unable to receive the service despite a GP referral. With an estimated at least 25,000 individuals in New Zealand currently living with ME/CFS, there is potentially a significant number, desperately needing help and not receiving it.

ANZMES believes it is time the government took this seriously and changed the classification to help these people and their families.

[1] https://www.frontiersin.org/articles/10.3389/fped.2019.00231/full

[2] Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. C, Disability in ME/CFS. Available from: https://www.ncbi.nlm.nih.gov/books/NBK284900/

[3] Ibid.

[4] Chu, et al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[5] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

[6] Rohleder, P. (2012). Critical issues in clinical & health psychology. London, UK: Sage.

[7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/

[8] Ibid.

[9] https://carers.net.nz/information/chronic-fatigue-syndrome-live-with-hope/

[10] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

Q: I was turned away from donating blood because they said ME/CFS is caused by XMRV. Is this right?

A: No, this is not correct. ME/CFS is not caused by Xenotropic murine retrovirus (XMRV). At one time it was thought that there was a link to XMRV. However this link turned out to be incorrect. When the initial findings could not be replicated by other researchers, it was discovered that the original samples had been contaminated during the laboratory procedures.

Furthermore we do not actually recommend that those with ME/CFS donate blood as it will likely impact your energy levels to varying degrees. There is evidence to suggest that those with ME/CFS have low blood volume compared to expected levels, and particularly if they also have orthostatic intolerance (van Campen et al., 2018).

Also there is currently a lifetime ban by NZ Blood Service from those with ME/CFS donating blood, because of the inconclusive nature of the root causes of ME/CFS.

Neil, S. J. D., & Campbell, E. M. (2020). Fake Science: XMRV, COVID-19, and the legacy of Dr. Judy Mikovits. in AIDS Research and Human Retroviruses, 36(7). https://doi.org/10.1089/aid.2020.0095

Rohleder, P. (2012). Critical issues in clinical & health psychology. Sage.

van Campen, C. M. C., Rowe, P. C., & Visser, F. C. (2018). Blood volume status in ME/CFS correlates with the presence or absence of orthostatic symptoms: Preliminary results. Frontiers in Pediatrics, 6(352). https://doi.org/10.3389/fped.2018.00352

van Kuppeveld, F. J. M., & van der Meer, J. W. M. (2011). XMRV and CFS – the sad end of a story. The Lancet, 379(9814), 27-28. https://doi.org/10.1016/S0140-6736(11)60899-4

Q: Is it OK for me to have surgery and anaesthesia if I have ME/CFS?

ANZMES does provide an Information Sheet with recommendations from our medical advisor Dr. Ros Vallings, so please contact us to request this (free for members). Alternatively, this google document provides extensive advice from Dr. Charles Lapp. https://docs.google.com/document/d/1MSiO2EInryV3uCrLpUWzGW4HmlLIghsJnDjGQAo3Qaw/edit

Q: What can I do to prevent getting Long COVID?

Rest is an absolute must when you have a diagnosed or suspected COVID-19 (SARS-CoV-2) infection. Drinking plenty of non-alcoholic fluids. Going to bed early, not working long hours, and not exercising. Pacing is important when returning to duties. Read more here: https://anzmes.org.nz/preventing-long-covid/

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