Many people will develop a sensitivity, or a hypersensitivity to one or more things as part of the onset of ME/CFS or as the illness becomes chronic and/or severe. For some, increased sensitivities to noise, smells, light, touch, etc. are among the most challenging symptoms to manage.
Due to the clinical and pathological overlap with Long Covid, many with this condition also experience a wide range of hypersensitivities, sensitivities and intolerances.
The ME Association invites you to complete this survey looking at hypersensitivities / sensitivities / intolerances in ME/CFS and Long Covid.
Why are we conducting this survey?
We are conducting the survey to find out:
- How common hypersensitivities / sensitivities / intolerances are in ME/CFS compared with Long Covid
- Whether they emerged at or before the onset of ME/CFS and Long Covid or during the course of your illness
- How severely these symptoms affect your activities of daily living
- How they affect your quality of life
The terms sensitivity and intolerance are to some extent overlapping whereas hypersensitivity implies a far more severe problem. Common sensitivities experienced by people with ME/CFS – particularly when they are severely or very severely affected – might also involve alcohol, chemicals, smells, drugs, food, pain, and temperature.
Many of these common sensitivities are included in the NICE Guideline as follows:
1.2.4 : Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:
- orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
- temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
- neuromuscular symptoms, including twitching and myoclonic jerks
- flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
- intolerance to alcohol, or to certain foods and chemicals
- heightened sensory sensitivities, including to light, sound, touch, taste and smell
- pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
Furthermore, as noted in The MEA Clinical & Research Guide (also known as the ‘Purple Book’) and the NICE Guideline, people with severe and very severe ME often experience sensitivity to light and sound – which can have a major impact on quality of life.
Dr Charles Shepherd Comments:
“Although the cause of these types of symptoms remains uncertain, and probably differs between sensitivities, one possible explanation is that a viral infection, or the resulting immune system response, resets those control centres and chemical transmitter systems in the brain that are responsible for how we recognise and then react to things like alcohol and chemicals.”
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
More Information:
You can find more information on hypersensitivities, sensitivities and intolerances in people with ME/CFS as follows: