MEA Website Survey: Why we’re asking about co-morbidities and ME/CFS | 03 April 2019

April 3, 2019


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

As part of our on-going collection of patient evidence that will be submitted to the NICE guideline committee later in the year, we are asking about the presence of what are called co-morbidities in this month’s website survey.

March survey results – Cognitive Dysfunction.

A co-morbid condition is a condition that is present in addition to having a primary diagnosis of ME/CFS.

In this case we are particularly interested in gathering evidence on the incidence of a number of conditions that are, or appear to be, more common in people with ME/CFS – when compared to a similar group of people who do not have ME/CFS.

The conditions we are specifically interested in are:

  • Endometriosis
  • Fibromyalgia
  • Hypermobility/Ehlers Danlos syndrome
  • Interstitial cystitis
  • Irritable Bowel Syndrome
  • Jaw Pain – Temperomandibular Jaw Dysfunction
  • Mastocytosis/Mast Cell Disease
  • Migraine type headaches
  • Multiple Chemical Sensitivities
  • Postural Orthostatic Tachycardia Syndrome (PoTS)

In some cases, there is both anecdotal and research information to support a link to ME/CFS – examples being hypermobility and PoTS.

In other cases, research evidence is limited, and the link is largely based on anecdotal reports.

You can find the website survey on the Homepage (about half-way down the page)

We are submitting this evidence to NICE because we believe it’s important for information on the presence of co-morbidities and management to appear in the new guideline on ME/CFS (expected in 2020).

Proper management of co-morbid conditions should form part of any ME/CFS management programme, especially where symptoms overlap with those of the primary diagnosis.

Evidence about co-morbidities can also be helpful when it comes to research into the causation of a condition such as ME/CFS – as there may be similar pathological mechanisms involved.

All of these conditions are covered in the 2019 ME Association clinical and research guide (‘The Purple Book’), which also has a section that summarises and references research into co-morbidity in ME/CFS.


We would like to hear your experiences of co-morbidities and ME/CFS. Please leave comments below on the ME Association website, or join the discussion on our Facebook, Twitter and Instagram pages.

Alternatively, you can forward any comments via head office email.

Thank you.

The ME Association

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1 thought on “MEA Website Survey: Why we’re asking about co-morbidities and ME/CFS | 03 April 2019”

  1. I suffered with hypermobility all my life but was only formally diagnosed some years after after ME/CFS upon my insistence to get a Rheumatologist appt. This is now being revised as Ehlers Danlos Hypermobilty variant.
    I was diagnosed with ME 26 yrs ago aged 34yrs and had to take retirement from my post as a ward sister within the NHS.
    I was also diagnosed with Fibromyalgia as a comorbidity, again after the M.E. diagnosis.
    I have TMJD and suffered bilateral derangement (left side caused when I underwent an arthroscopy for the spontaneous derangement of right side) I then had to endure a 5 hr bilateral arthroplasty operation to try and correct this, but I am still left with an open lock of my mouth of only approx. 1cm, and severe pain from jaw to temporal region bilaterally.
    I suffer with IBS, a wheat and now seafood intolerance.
    I do experience Pots symptoms.
    I have ‘visual’ migraines

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