Medical Professionals

ME/CFS and long COVID in Primary Care

ANZMES releases two new resources to guide assessment and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and long COVID.

ANZMES (the national advisory for ME/CFS and a RNZCGP registered provider of continuing education) has released two short reference guides for primary care. These resources offer a snapshot of the key aspects of diagnosis, assessment, symptom management, comorbidities, and care and support planning.

“ME/CFS is a complex and often misunderstood condition, so the aim of this one page resource is to provide a simple reference guide for busy health professionals. We believe that education is key to improving outcomes for patients,” says ANZMES president, Fiona Charlton.

“Although assessment and evaluation for long COVID differs to that of ME/CFS, the management of long COVID, when there is no organ damage, is very similar to the management of ME/CFS. Utilising the expertise of our medical team, we provide a separate one page resource for long COVID in primary care.” she says.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Definition

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term multi-systemic illness involving the nervous, endocrine, autonomic, and immune systems. The symptoms can range from mild to severe. This guide is designed to help GPs assess and manage ME/CFS and can be used in conjunction with the most current Diagnostic and Management Guidelines for ME/CFS.

Diagnostic Criteria

Despite there being over 20 different types of criteria developed over the past few decades, the criteria produced by the Institute of Medicine, in 2015, is considered the easiest, quickest, and most relevant criteria for a diagnosis of ME/CFS. This stipulates that three primary symptoms must be present: 1) post exertional malaise (PEM)  2) unexplained fatigue 3) unrefreshing sleep. At least one of either orthostatic intolerance or cognitive impairment must also be present. Symptoms must be present for at least six months, be moderate to severe and present 50% of the time.

The symptoms of a number of diseases can mimic ME/CFS, therefore it is important to conduct differential diagnosis to rule out other conditions first (for example,other fatiguing illnesses – anaemia, autoimmune disease, cardiac disease, endocrine disorders, malignancy, rheumatological disorders, neurological disorders – (such as MS, Parkinsons), primary sleep disorder, depression. Routine blood tests and urinalysis will help with this and it is important to note that with ME/CFS these standard tests are often within normal range.

During the acute phase of ME/CFS lymph node palpation may demonstrate slight enlargement. Although this reduces as the illness continues, patients may experience ongoing tenderness and pressure pain points.

Comorbidities

ME/CFS has common comorbidities such as Fibromyalgia (an overlapping condition), dysautonomia, allergies, irritable bowel syndrome (IBS), sleep disorders, Ehlers Danlos Syndrome or hypermobility, and multiple chemical sensitivities (MCS). However the presence of post-exertional malaise and symptom exacerbation, a key illness feature, increases the likelihood of ME/CFS as the correct diagnosis.The NASA Lean Test or the Active Stand Test are useful for diagnosing dysautonomia, such as neurally mediated hypotension or postural orthostatic tachycardia syndrome.

Triggers

ME/CFS has multiple triggers. The virus most associated with this illness is Epstein Barr (mononucleosis/glandular fever), however other viruses (for example, SARS-1, cytomegalovirus) and bacterial infections (for example, lyme, Coxiellia burnetti) are also associated, as are genetics, and environmental factors such as toxic chemical exposure or trauma (physical/emotional). ME/CFS can also be triggered by anaesthesia and surgical procedures.

Symptom Management

ME/CFS is a highly individualised illness, requiring a personalised, patient-centred approach. As there are many symptoms it is useful, in consultation with the patient, to identify the most pressing symptoms and tackle one at a time, per appointment. The main symptoms that can be managed with regular monitoring and review are: pain, sleep, stress, and general health measures. However, the key tool to introduce to patients is pacing – a self-management technique that balances activity and rest to help reduce or prevent PEM. Energy management helps support rehabilitation.

Everyone’s available energy limits are unique and what one person with ME/CFS can do in a day may be very different from another person with ME/CFS. During the course of the illness the energy envelope will fluctuate alongside the severity of symptoms. The more severe the symptoms, the less energy an individual has to do even a basic activity, such as showering or making a meal. In the acute phase, with appropriate pacing, an ME/CFS patient can recover. If symptoms remain longer than 18 months, continued activity pacing is recommended. 

Care and Support Planning

Care and support planning is crucial for a patient-centred approach. It is important to assess their individual circumstances and needs and educate the patient on symptoms and prognosis. Empathy is key, and acknowledging the reality of living with ME/CFS can build an effective therapeutic relationship, as can recognising that they may have experienced prejudice or disbelief. It is very important to include written handouts to help counter the cognitive impairments, providing the patient with a summary of your discussion and management plan.Patients may also require work certificates, insurance support, and letters to employers or schools.

When planning care and support a team-centred approach is beneficial, incorporating specialists, physiotherapists, occupational therapists, counsellors, and other health professionals as required. Local ME/CFS support groups can help patients with socialisation, understanding, and support. You can find a list of regional groups on the ANZMES website.

Additional resources with useful information, to inform your clinic practice, include local Health Pathways, the 2021 NICE guidelines,¹ and Clinicians Primer.²  ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn credits whilst they learn about ME/CFS and post COVID conditions.

long COVID

Definition and Trigger

Long COVID has one trigger, the SARS-CoV-2 virus, also known as post-acute sequelae of SARS-CoV-2 or Post COVID condition, or long haul COVID are terms to describe long-term unexplained symptoms following infection with COVID-19 virus and are symptoms characteristic of ME/CFS and post viral syndromes.

Diagnostic Criteria

Long COVID is defined as symptoms consistent with COVID-19 infection that persist for more than 12 weeks after initial infection that cannot be explained by an alternative diagnosis. Symptoms may last weeks, months, or years, and may fluctuate as in ME/CFS. Some people with long COVID, who are still experiencing symptoms after six months, may fit the diagnostic criteria for ME/CFS. The Ministry of Health has published guidelines.

Cormorbidities

As long COVID is relatively new, there is not evidence to suggest that it has typical comorbidities in the way ME/CFS does. It may however, have issues related to organ damage or upper respiratory tract disorders, that are unique to this particular virus.

Symptom Management

People with long COVID experience a wide range of symptoms, with potentially multiple body systems involved, as is the case with ME/CFS. Research is showing that people with long COVID may experience more than 200 different symptoms, and many of them overlap with the experience of people with ME/CFS.

Breathing disorders and upper respiratory tract complications differentiate long COVID from ME/CFS. A referral to a cardio respiratory physio is helpful for breathing pattern assessment.

The cardinal symptom that characterises ME/CFS is post exertional malaise (PEM), which is a worsening of symptoms after physical, mental, or emotional activity, which can occur immediately or up to 72 hours after the activity. People with long COVID are also experiencing PEM or what is more commonly referred to for this subgroup as post exertional symptom exacerbation (PESE). It is very important, despite the patient’s strong desire to return to work, sport, and daily routines, to ensure that they follow a slow, steady, and measured return to activity. Patients must be able to perform daily activities (washing, dressing, meal prep etc) without PESE before a careful, symptom paced return to exercise is considered. An activity diary is very helpful to track symptoms and energy levels, to measure what types of activity induce PESE and those that do not. Referrals to occupational therapists are very helpful for energy saving devices, and support with learning to pace activities.

Care and Support Planning

As with ME/CFS (see information above), a patient-centred approach is paramount. Before a COVID-19 infection, the majority of people experiencing long COVID were healthy, fit, and of working-age, living active lifestyles. The sudden change in functionality and energy can be a big shock and there is much higher incidence of anxiety and depression for people with long COVID when compared to those with ME/CFS. Wellbeingsupport.health.nz is a great resource for free early intervention for mild to moderate mental health support.

The ME/CFS support groups and organisations throughout Aotearoa/NZ have opened their doors to people with long COVID – offering support, advocacy, advice, information, and education.

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CME Education

For health professionals wanting to learn more about ME/CFS and long COVID, ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn CME/CPD credits whilst they learn about ME/CFS and post COVID conditions.

Visit ANZMES medical professionals page for more information.

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ANZMES is the national advisory for ME/CFS offering representation and advocacy, national level support, education, and research funding. ANZMES is a RNZCGP registered provider of continuing education.

“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.

On Wednesday 12^th 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.

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.

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.” 

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:

http://www.ourhealthhb.nz/assets/CORONAVIRUS/Resources-for-public-2021/21046_TWOHB_COVID-Self-Management-Booklet_1.4.pdf

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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.

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Dr. Charles Shepherd provides an extensive report on Long COVID and ME/CFS. Read it here:

https://meassociation.org.uk/wp-content/uploads/Long-covid-and-MECFS-April-2021.pdf

Dr. Charles Shepherd also provides an extensive report analysing the similarities and differences between Long COVID and ME/CFS. Read it here:

https://meassociation.org.uk/wp-content/uploads/LONG-COVID-AND-MECFS-ARE-THEY-THE-SAME-MAY-2022.pdf

Paediatric pacing guide by ME Action UK:

Just In Time for the School Year: A New Pediatric Pacing Guide

Paediatric pacing guide.

Adult pacing guide by Action for M.E.:

https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf

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.

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] 

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.

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).