Medical Professionals
New CME accredited series for health professionals
Announcement – new CME accredited ME/CFS education series for health professionals
ANZMES is excited to announce a new CME accredited education series for health professionals, providing monthly news, articles, and podcasts with the latest evidence based information about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID Conditions, launching on the 13th of April.
Each month we will be talking to leading ME/CFS experts to provide clinicians with the latest information about ME/CFS, including diagnosis, best practice management, offering case studies and links to deep dive content and research to help you and your patients understand and manage both ME/CFS and Long COVID.
“ME/CFS is a complex and often misunderstood condition and we believe that education is key to improving outcomes for patients,” says ANZMES president, Fiona Charlton.
“We understand that there is a lot of information out there quoting flawed studies and offering outdated advice. We also understand how time poor health professionals can be. That is why we are offering a comprehensive and robust program with up-to-date, peer-reviewed information that gives them valuable CME credits, in a flexible, online format that is easy to access and digest.
“We’re thrilled to launch this resource to help healthcare professionals gain a better understanding of the condition.”
The podcast will feature interviews with leading experts, researchers, clinicians and patient advocates, including Dr Ros Vallings, Emeritus Professor Warren Tate, Dr Anna Brooks, Dr Neera Jain, and Dr Lynette Hodges and will cover a range of topics from classification and symptomology, best practice management, and biomedical research advances.
With informative and engaging discussions, this series promises to shed light on the many facets of ME/CFS where health professionals can explore the latest findings, treatments and lived experience of this debilitating illness.
To receive the series in your inbox you can sign up online at: https://forms.gle/ntH67hkz2S5Jj8xt7
The Associated New Zealand Myalgic Encephalomyelitis Society, (ANZMES) is the national advisory body for ME/CFS in New Zealand, offering representation, information, national level support and research funding.
ANZMES is a RNZCGP registered provider for continuing education.
World ME Alliance calls on WHO Director General to recognise ME alongside Long COVID
On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health
Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastation that Long COVID is
causing around the world, and sets out five key elements of a plan to drive change.
It is vital that the impact of Long COVID is recognised at the highest levels, and the World ME Alliance
congratulates Dr Ghebreyesus on this stance.
However, as more research is undertaken, it is becoming clearer that a large proportion of those
with Long COVID now meet the criteria for an ME/CFS diagnosis. The WHO must recognise this as efforts to find treatments and a cure continue.
The World ME Alliance (of which ANZMES is a founding member) has written to Dr Ghebreyesus calling on him to meet with representatives.
Dr Ghebreyesus has previously committed to reaching out to ME experts, and we hope that through collaborative efforts we can learn from ME, and ensure that progress for people with Long COVID doesn’t leave the millions already suffering with ME behind.
Read the full letter from the World ME Alliance and its 19 members below.
Preventing Long COVID
Rosamund Vallings MB BS
We know that any viral illness will be followed by a post-viral phase. During this time the body is theoretically in “recovery mode.” Even after a simple cold, a person can be left feeling rather drained and limp for a few days but will usually slowly recover.
In those who are diagnosed with ME/CFS, the majority will have started this illness with a viral infection, from which they never seemed to recover. When you have a viral illness, your immune system goes into “disarray” and is upsetting your whole system, seemingly fighting the virus. Gradually the fight is over and successful, and you feel recovered. But those who end up with ME/CFS have an immune system which seems to persist in the fighting mode, producing a lot of extra hormones, chemicals and many other immune system abnormalities. This is exhausting and leads to many ongoing changes and symptoms. The changes may affect the body chemistry and the metabolism further, and have far-reaching effects on the brain, muscles and other body systems.
So why should the after-effects from COVID-19 be any different? There are thousands of people around the world now being diagnosed with the condition called “Long COVID,” and immunologically and chemically, it is no different from ME/CFS – a prolonged post-viral state – often very severe.
We have to ask ourselves “Can this condition be prevented?” as there is no “quick-fix.”
We do know however that pushing yourself hard during the recovery phase can lead to worsening symptoms and potentially to a final diagnosis of ME/CFS.
After COVID-19 most people yearn to get their health back and return to a full life again. There is a temptation to return to normal as soon as possible. But there is certainly good evidence now that pushing hard mentally or physically too soon, can prolong the illness, or even cause relapse.
During the recovery phase from COVID-19, it is therefore important to take supreme care of yourself in order to minimise the risks. We know that some people are probably genetically vulnerable, and we also know that those already with a diagnosis of ME/CFS almost always will risk worsening symptoms or even serious relapse if they push too hard mentally or physically. So, we need to translate these facts to those in the recovery phase from COVID-19.
While you are recovering from COVID-19 you need to acknowledge the known facts. So,
- stay home and rest while you still have symptoms (however mild)
- do not indulge in hard exercise, or long work hours
- go to bed early
- rehabilitate very slowly and cautiously.
While this approach may not prevent a prolonged illness such as ME/CFS, you are giving yourself a good chance of regaining your pre-COVID health.
COVID-19 self-management booklet created by Our Health Hawkes Bay Whakawāteatia:
What is Long COVID?
Long COVID is a condition that occurs in people with a history of probable or confirmed SARS-CoV-2 (COVID-19) infection. It usually begins 3 months from the onset of COVID-19 with symptoms that last for at least 2 months that cannot be explained by an alternative diagnosis. For some people symptoms can last months after the infection has gone. This is sometimes called post-COVID-19 syndrome or Long COVID.
Common Long COVID symptoms include:
- extreme tiredness (fatigue)
- shortness of breath
- chest pain or tightness
- problems with memory and concentration (“brain fog”)
- difficulty sleeping (insomnia)
- heart palpitations
- dizziness
- pins and needles
- joint pain
- depression and anxiety
- tinnitus, earaches
- feeling sick, diarrhoea, stomach aches, loss of appetite
- a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
- rashes
How is Long COVID treated?
Treatment for Long COVID is similar to that of ME/CFS. It is about managing symptoms and pain.
The key to symptom management is pacing.
If PEM (post-exertional malaise) is experienced, you must avoid exercise and activities that cause fatigue or increased symptoms, and conserve your energy.
Dr. Charles Shepherd provides an extensive report on Long COVID and ME/CFS. Read it here:
Dr. Charles Shepherd also provides an extensive report analysing the similarities and differences between Long COVID and ME/CFS. Read it here:
Paediatric pacing guide by ME Action UK:
Paediatric pacing guide.
Adult pacing guide by Action for M.E.:
COVID-19: to vaccinate or not to vaccinate: advice for people with MECFS
The government mandate stipulates that certain industries require vaccination in order to retain employment. Although we have advised MoH that this is not as simple for those people with ME/CFS (pwME) who are affected by this Order, we have not been able to change their decision through our advocacy efforts.
For pwME who are not employed in the mandated industries, there will still be barriers if they choose to remain unvaccinated due to the introduction of vaccine certificates/passports. However the decision to vaccinate or not vaccinate remains a personal choice.
ANZMES provided MoH with a detailed argument in favour of MoH allowing physician discretion on a patient-by-patient basis as to whether a medical exemption is warranted. We have not received a response to our advocacy from MoH to date. The argument stipulated that only the physician and the patient can truly know, based on the patient’s personal medical history, whether a risk of adverse reaction is sufficient enough to warrant a medical exemption.
This was based on Professor Warren Tate’s advice that people with ME/CFS who often experience severe food allergies, chemical hypersensitivities, are prone to frequent debilitating relapses and have a significant compromised level of activity, may be at a higher risk to adverse side effects to vaccination in comparison to people with ME/CFS who do not have these extra dimensions of the illness.
An article released today has a headline suggesting that Professor Warren Tate believes all people with ME should be exempt. This is not the case. Prof. Tate advocates for a subgroup of pwME, as above. [https://www.rnz.co.nz/news/national/456598/expert-says-chronic-fatigue-sufferers-should-be-exempt-from-covid-19-vaccination]
For pwME who do not have these extra dimensions of the illness, ANZMES released an information sheet regarding COVID-19 vaccinations for pwME, which included expert advice from New Zealand and internationally. The recommendations provided by these experts were that contracting COVID-19 poses a greater risk to health than the side effects of the vaccination. However for a small percentage of pwME, the potential adverse reactions may seem to outweigh the risk of contracting the virus. This is because there is potential for a relapse of ME/CFS symptoms. And because household members can provide a level of protection to unvaccinated members if they themselves are vaccinated. [https://anzmes.org.nz/experts-talk-covid-19-vaccine-for-people-with-me-cfs/]
MoH advises on their website that if people with ME/CFS experienced adverse reactions to the first dose of the vaccine, that they could hold off getting the second dose until their symptoms resolve completely. [https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-response-planning/covid-19-mandatory-vaccinations/covid-19-exemptions-mandatory-vaccination#temp-exempt scroll down the page and click on Vaccine Temporary Medical exemptions in either Word or pdf format – updated 30 November. On page 7 of this file you find reference to Myalgic Encephalomyelitis.
Also MoH now states that if the Order applies to a person and they are not vaccinated, but feel that they may be eligible for a temporary exemption, then their usual medical practitioner or nurse practitioner can apply on their behalf. However, it is not that simple for pwME. Based on the criteria that ME/CFS patients would be applying under, the application would need to be done by a relevant specialist (e.g. neurologist, rheumatologist, immunologist, etc.). [https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-response-planning/covid-19-mandatory-vaccinations/covid-19-exemptions-mandatory-vaccination#temp-exempt]
The preliminary findings of the self-reporting survey ANZMES conducted with the ME/CFS and Long COVID community suggests that the reactions to the vaccine have been as varied as the symptomatology of ME/CFS itself. For some there was no adverse reaction. Some improved. For others, only the normally expected immune response was experienced. Whereas for a significant smaller percentage there was a considerable relapse. There does not seem to be a pattern as to who fares well and who experiences a relapse. Although the survey findings suggest that the more disabling the ME/CFS symptoms, the more prone to a relapse after vaccination, relapse can occur at any functional capacity state for pwME. However, it is also likely that no adverse reactions, or only temporary reactions are experienced. This shows how highly individualised vaccine reactions are, just as is the case for the symptomatology of ME/CFS. [https://anzmes.org.nz/anzmes-preliminary-survey-findings/]
ANZMES also petitioned for a fractionated dosing trial at the request of the community. Although this trial will not go ahead, IMAC are investigating the possibility of lower dosing. However, as trials have not been done, MoH advises that lower doses will not be considered sufficient for protection and therefore someone who receives a fractionated dose would not be eligible for a vaccination certificate/passport. Research into the efficacy of lower doses as protection against COVID-19 would need to be conducted in order for this to change.
It was reported by RNZ as a quote from a MoH spokesperson, that there is not sufficient evidence to suggest that lower dosing will mitigate adverse reactions to the vaccine. It is correct that no trials have been conducted into reactions to lower dosing for pwME. However, in studies that have been conducted into fractionated dosing, reduced doses appear to reduce reactogenicity (adverse side effects).
ANZMES does not provide medical advice or opinions as an organisation, the information provided above is a summary of expert advice and government information. This is so that the ME/CFS community can be informed of all sides of the situation, and can therefore make decisions based on their own individual circumstances. As always, this should be done in conjunction with the individual’s usual medical professional(s).
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. 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
Dr Vallings to speak in Hamilton
Dr Vallings is speaking in Hamilton at the Methodist Church, corner of Normandy Ave and Bader St, Melville, Hamilton 10.30 to 11.30 on Thursday 13th August 2020.
Please Register by phoning Tracey on 07 8344745 or email tracey@mswaikato.org.nz.
Please arrive at 10.15 for a prompt start. Morning tea provided. A gold coin koha/donation will be greatly appreciated.
Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome – Jama network
When does an illness become a disease? When the underlying biological abnormalities that cause the symptoms and signs of the illness are clarified.
Over the past 35 years, thousands of studies from laboratories in many countries have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS, compared with healthy controls: in short, there is something wrong. Moreover, most of the abnormalities are not detected by standard laboratory tests. In 2015, the Institute of Medicine of the National Academy of Sciences concluded that ME/CFS “is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients,” affects up to an estimated 2.5 million people in the United States, and generates direct and indirect expenses of approximately $17 billion to $24 billion annually.
To read the full article see this link https://jamanetwork.com/journals/
