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NICE: New Guidance on Chronic Fatigue Syndrome / ME

New NICE guidelines for ME/CFS were finally published on 29 October 2021. They replace the 2007 guidelines and mark a welcome shift in emphasis, notably by making a clear pronouncement that ME/CFS is a “complex, chronic medical condition affecting multiple body systems”. The recommendation that graded exercise therapy is a suitable treatment has been removed, which is heartening news for the patients and campaigners who have suffered from debilitating worsening of symptoms in response to this approach in the past and who have used their collective voice to raise this concern with the “powers that be”. Cognitive behaviour therapy remains in the guidelines, but there is a clear statement that CBT is not offered as a treatment for the disorder itself.

There is as yet no laboratory test for ME/CFS; the diagnosis is made on clinical history, but the following tests are recommended as part of initial assessment:  full blood count, urea and electrolytes, liver and thyroid function, ESR and CRP, calcium and phosphate, HbA1c, serum ferratin and creatinine kinase, plus in some cases Vitamin D and B12 levels, and screening for adrenal insufficiency. Coeliac disease testing is also recommended.

The core symptoms of this illness are debilitating fatigue, post-exertional malaise, unrefreshing or disturbed sleep and cognitive difficulties. The common comorbid problems that occur alongside these features are:

  • Orthostatic intolerance
  • Temperature hypersensitivity
  • Neuromuscular symptoms
  • Flu-like symptoms
  • Intolerance to alcohol, foods, chemicals
  • Heightened sensory sensitivity to light, sound, touch and taste
  • Pain including pain on touch, muscle pain, headaches, eye pain, abdominal pain, joint pain (with or without redness and swelling)

The recommendations are strong on the need for adequate understanding and support for patients with this debilitating condition, but recommendations for treatment of core symptoms or associated issues are lacking. This does not, however, mean that treatment options are not available: the Burghwood Clinic has an established history of providing effective treatment for ME/CFS, including specific treatments for food and chemical intolerance. Read more information about what we can offer on Chronic Fatigue Syndrome.

Read the NICE guidelines on Chronic Fatigue Syndrome