As this community grows I get more and more questions about certain words or acronyms I use in my writing and graphics, so I thought I would create a page to answer some of the most frequently asked questions about M.E.
I hope this will be helpful to you, please share any of the images from this page. It would help us raise awareness and eliminate stigma if more people understood this condition.
Frequently Asked Questions About M.E.
This page won’t only contain answers directly concerning M.E. but will also contain a selection of terminologies and subjects commonly referred to in our community. Get in touch if you have any suggestions or questions.
Note: As always, you may freely download and share these graphics on social media to help raise awareness, but please do not edit or crop them in any way, they are to remain in tact, as is. They are not to be printed on any physical items or sold in any way shape or form. If this is still unclear, please see Terms Of Use. Thank you!
M.E. | CFS | PVFS | PEM/PENE | PENE | Crash | CBT | GET | LDN |
What is M.E?
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Myalgic Encephalomyelitis is a devastating neuroimmune disease which affects all body systems including the neurological, digestive, muscular, immune, endocrine and cardiovascular systems.
Millions of people around the world have this life-draining illness. Even those who are mildly affected are unable to work or socialise without causing significant exasperation of symptoms.
An estimated 25% of patients are housebound or bedridden with Severe M.E. Unable to tolerate light and sounds or even touch. The most severe are unable to speak and are tube fed. Only an estimated 5% of people with M.E. recover completely. Most will fluctuate between remissions and relapse for years on end.
What is CFS?
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Chronic Fatigue Syndrome is the name given to a collection of debilitating symptoms, lasting more than 6 months, when no other cause can be found.
It is diagnosed by process of elimination. Not to be confused with chronic fatigue which is a symptom of many other conditions.
In some countries the terms CFS and M.E. are used interchangeably as they seem to manifest in much the same way.
What is PVFS?
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PVFS = Post Viral Fatigue Syndrome
The initial diagnosis given when a patient is still feeling very ill after a viral infection, even though the virus has passed.
PVFS is common and, with lots of rest, it should resolve itself within a few weeks to a few months. If the symptoms persist for 6 months or more, and no other causes can be found, a new diagnosis of CFS or M.E. may be made.
What is PEM or PENE?
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PEM = Post Exertional Malaise
PENE = Post Exertional Neuroimmune Exhaustion
Both are considered key symptoms of M.E. (Myalgic Encephalomyelitis). It is when a patient’s symptoms flare up after minimal physical, mental or emotional exertion. It can be delayed for up to 72 hours and can last for days, weeks or even months.
What is PENE?
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PENE = Post Exertional Neuroimmune Exhaustion
The International Consensus Criteria (ICC) uses this term to refer to the mandatory characteristic of M.E. which is exercise and exertion intolerance.
It’s described as having a delayed onset, prolonged recovery and acute flu-like symptoms. It results in a substantial reduction in functioning. Even daily living activities can cause a relapse.
What is a crash?
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In the M.E. community a “crash” is an acute episode in which the patient becomes extremely weak or incapacitated.
This usually happens after physical or emotional stress. Perhaps after showering or following an unexpected loud noise.
The patient might temporarily lose control of bodily functions and may experience loss of speech, seizures or paralysis.
What is CBT?
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CBT = Cognitive Behavioural Therapy
CBT is a talk therapy based on the idea that negative thinking patterns and behaviours could be perpetuating one’s physical condition.
It is not a treatment for M.E. but, if done by an M.E. literate therapist, could help some patients adjust to their new circumstances
What is GET?
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GET = Graded Exercise Therapy
GET is a structured exercise programme which starts with low intensity exercise, steadily increasing in intensity over time.
It is not an appropriate treatment for M.E. Many patients have suffered deterioration after doing GET. It can however be helpful for those who are recovering steadily and are able to sustain the increased exertion.
What is LDN?
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LDN = Low Dose Naltrexone
Naltrexone is an opioid antagonist used to treat opioid or alcohol dependence.
Its off-label use, in very low doses, can be beneficial in managing various chronic illnesses.
Some of the most frequently experienced benefits of LDN are: reduced pain and brain fog as well as an increase in energy.
