ME/CFS is a neuroimmune, neuroinflammatory illness that affects numerous organ systems throughout the body, involving dysfunction of the vascular, autonomic, neurological, mitochondrial, metabolic, connective tissue, endocrine, and immune systems.
A reduction/impairment in ability to engage in pre-illness activity that persists for 6 months or more
Fatigue that is profound, not lifelong, not the result of ongoing exertion, and not alleviated by rest
Post-exertional malaise (PEM) in which physical or mental activities result in a delayed exacerbation of symptoms and reduction in functioning
Cognitive impairment and/or orthostatic intolerance
These core features of illness must be moderate to severe and present at least 50% of the time.
Pain in the muscles and joints
Headaches of a new type, pattern, or severity
Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation
Sensitivity to light, sound or vibration, taste, odor or touch
Gastrointestinal symptoms such as nausea or abdominal pain
Muscle fatigability, weakness and fasciculation; poor coordination and ataxia
Autonomic and endocrine symptoms such as poor temperature regulation, cold or heat intolerance
Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities
80% of ME/CFS occurs following a viral infection such as Epstein Barr Virus, however can come on after chemical exposure or severe stress.
Patients describe a marked decline from their pre-ME/CFS level of functioning. This includes being unable to exercise or play sport, work, and some are severe enough that they are unable to leave the house or are bed bound.
Some patients develop ME/CFS gradually over months or years. For many others, the symptoms begin much more rapidly.
- Beth Pollack (Research Scientist, MIT)
There is no specific diagnostic test for ME/CFS, but tests to exclude other illnesses are important.
ME/CFS is most often diagnosed based on history of symptoms, the exclusion of other illnesses and medical conditions.
According to the Health Pathways criteria, a diagnosis of chronic fatigue syndrome must include the following features:
1. Fatigue, including after exertion (or post-exertional malaise)
2. Sleep dysfunction
4. Two or more neurological or cognitive symptoms
(e.g. confusion, impaired concentration or short-term memory consolidation, disorientation, difficulty in information processing, perceptual and sensory disturbances, ataxia, muscle weakness, cognitive/sensory/emotional overload phenomena).
5. At least one symptom from two other key categories
(e.g. autonomic, neuroendocrine, immune).
6. Persistent illness for at least 6 months, or 3 months for tamariki (children).
Onset is usually distinct but may be gradual.
While there is no cure for ME/CFS there are a number of strategies for managing symptoms and improving a patient’s quality of life.
A key simple resource overview for diagnosing and managing ME/CFS is Diagnosing and Management of Myalgic Encephalomyelitis and we have more management tips and resources below.
About Long COVID
Long COVID is a term used to describe a collection of symptoms that continue or develop after an acute COVID-19 infection, and that cannot be explained by any other condition.
These symptoms affect many systems of the body, including the cardiovascular, neurological, and respiratory systems.
Anyone can develop Long COVID, even tamariki (children), and even those who had little or no symptoms of the virus. It is being seen across all demographics throughout the world.
For some people the COVID-19 virus can cause damage to the heart or lungs or trigger the relapse or onset of another condition. These can include diabetes, heart disease, thyroid problems, inflammatory bowel disease, cardio-respiratory conditions, musculoskeletal conditions like arthritis or autoimmune disorders.
DIAGNOSING LONG COVID
There is no diagnostic test for Long COVID.
Long COVID is diagnosed when a patient has ongoing or new symptoms for longer than 3 months after having the COVID virus.
According to the Health Pathways criteria, assessment of Long COVID entails the following process:
Take details of the acute illness and check for current post-acute symptoms and mental health sequelae.
Ask about the impact of Long COVID symptoms on the patient's quality of life and other psychosocial determinants.
If the patient has symptoms which could potentially indicate a significant underlying condition, assess via the relevant symptoms pathway first.
Examine the patient and check for other conditions
Consider basic blood tests and arrange further investigations according the the patient's symptoms or concerns.
Avoid excessive investigations as nonspecific abnormalities are common.
Assess the management of pre-existing long-term conditions. Identify treatments that have been altered as a consequence of the acute COVID-19 infection and consider any changes that are required.
Guidelines for the Management of ME/CFS and Long COVID
Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are no longer considered appropriate treatment methods for those with ME/CFS, although counselling and psychology can be used to help the person deal with the emotional disruption the illness causes to their lives.
A holistic assessment should be carried out to inform the individual's care plan.
This could include:
As well as gathering information on symptom triggers, medications tried, and supplements tried.
Medication / Supplements
Be open to trialing medications and supplements as needed.
There is ongoing medical research occurring surrounding suitable treatments for ME/CFS.
Some more commonly used medications include:
Some ME/CFS patients have intolerance to a variety of medications. In these patients, drugs should be started at low doses and increased slowly to avoid triggering drug sensitivities. See resource.
The most widely-used self-management technique within the ME/CFS community is energy management or Pacing.
Further information can be found on this via via our resources section or through our Client Support Coordinators and within the NICE guidelines.
For more information on Pacing email us or view Pacing for People with ME.
Support with appropriate employment or schooling needs, as well as sickness or disability benefits as needed.
The individual may need referral to other health services and specialists, such as physios, gastroenterologists, cardiologists, and immunologists.
Ensure appointments with the patient are adaptable in time, length, and frequency, as well as provide options for online or phone appointments.
Orthostatic Intolerance and PoTs
Many people with ME/CFS and Long COVID have Orthostatic intolerance and PoTS. Bateman Horne Centre has excellent information on OI.
PoTS can be tested using the 10-Minute NASA Lean test, and can be treated with increasing salt and hydration, compression clothing and medications.
A list of Pharmacological Interventions are included in the OI Bateman Horne resource.
Addressing sleep challenges can have an impact on fatigue and cognitive disfunction and improve mood.
Apps or wearable devices can be used to track sleep patterns and investigate sleep disorders.
Address other areas that could contribute to sleep problems such as restless leg syndrome, PEM and nervous system ‘overload’ or anxiety and stress or pain.
Medications and supplements that can be used include:
Sleep medications such as Zopiclone
People with ME/CFS and Long COVID often have aches and pain in their muscles and joints and headaches.
Some medications that have been used include:
low dose naltrexone
muscle relaxants or tricyclic antidepressants (TCA’s) like amitriptyline, nortriptyline and doxepin
gabapentin or pregabalin for nerve pain
Other pain management methods include stretching and movement therapies, gentle massage, acupuncture and heat packs.
Supplements that support inflammation and muscle relaxation such as magnesium, Omega 3’s, Curcumin in Turmeric and Boswellia can also help.