Admission to hospital with CFS/ME

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[DATE OF FIRST PUBLICATION OF THIS PAGE - JUNE 2024]
By Craig Robinson

Introduction

ME and CFS sufferers often find hospital admissions more challenging than the background population.

This is due to many reasons: (this list is by no means exhaustive)

  • Excess noise and light can be very difficult due to the sensory symptoms of photophobia and noise sensitivity that many sufferers count amongst their symptoms
  • Sleep disruption due to the hospital environment - again, many sufferers have poor sleep patterns anyway, and this is often worsened by the 24/7 nature of a hospital ward. See Sleep is vital for good health - especially in CFS
  • The need for undisturbed rest periods is paramount and often ignored or not understood by hospital staff.
  • Sufferers often have heightened and adverse reactions to prescription drugs, and sometimes this includes anaesthetics - see Drugs in the treatment of CFS - always start with tiny doses and CFS and Anaesthetics
  • Sufferers often have concurrent problems of multiple chemical sensitivity (MCS) and so the 'chemical nature' of hospitals (cleaning agents etc) can be very detrimental - see Multiple Chemical Sensitivity (MCS) - a common problem and often triggered by exposure to chemicals and associated links therefrom. Indeed, going further than the Guides below, some sufferers will experience MCS symptoms from 'fragranced' toiletries, laundry products, used in the hospital, essential oils (possibly used as complementary medicine on wards), cleaning products, air-fresheners. and also cosmetics, used by other patients or hospital staff. You will know what affects you - do make this very clear. Hospital staff will most likely need to be told that MCS sufferers [most often] react to the chemicals NOT to the smells of chemicals, as such. It is exposure to volatile organic compounds (VOCs) that should be limited, as far as possible
  • Some sufferers have multiple food allergies and again this should be communicated to hospital staff. Explain this fully, and where appropriate describe the PK diet - The Paleo Ketogenic Diet - this is a diet which we all should follow (Include histamine problems where these exist)
  • Lack of knowledge of medical staff of CFS and ME, and sometimes, sadly, actual hostility towards CFS and ME patients. This is a difficult one to overcome. Sufferers should make sure that the hospital staff are aware of the new NICE Guidance (NG206). See section 2 below. Hospital staff should be shown the 2 excellent guides as in section 3 below. Sufferers should not be pushed physically (or in any other way, e.g., cognitively) by hospital staff. This may be especially relevant with respect to post operative care and physiotherapy, which should be EXTREMELY gentle - see Physios for ME
  • Those symptoms which can give sufferers particular problems within a hospital environment should be emphasised to hospital staff, and include, for example:

NICE Guideline NG206 on CFS/ME

The new NICE Guideline (October 2021), after reviewing hundreds of medical papers, has finally given updated advice with respect to to Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) 

The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness. [NICE, NG206,Box 5]

And also that: 

CBT for people with ME/CFS: (1)aims to improve their quality of life, including functioning, and reduce the distress associated with having a chronic illness (2) does not assume people have 'abnormal' illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours and physiology interact with each other. [NICE NG206, 1.12.32]

The Guideline went further on Graded Exercise Therapy (GET) and stated that: 

Do not offer people with ME/CFS:....any programme ...that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy [NICE NG206, 1.11.14]

Reference - NICE Guideline NG206 - "Recommendations"

Useful Guides

PLEASE DO READ THESE EXCELLENT GUIDES AND MAKE SURE THAT THE HOSPITAL STAFF ARE GIVEN COPIES

These booklets are necessarily 'hard-hitting' [to ensure that hospital staff 'get the message'] and so be sure that you are 'in the right frame of mind' before reading them.


INFORMATION FOR PATIENTS AND HOSPITAL STAFF REGARDING TREATMENT OF PATIENTS WITH M.E.

Supporting people with ME/CFS in hospital


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