Avoiding Harmful Management, Therapies & Damaging Referrals
Due to the severity of illness in people with Severe and Very Severe ME care and treatment would be planned and catered to ensure that management of illness, dispensing of treatments and provision of meals and bathing is done in the most non-invasive way possible. As some Very Severe/Profound ME patients may be tube fed and administered meds intravenously there would be a very special care given to them.
Sometimes ME and Severe ME patients may find themselves
confronted with inappropriate treatment and management referrals, and it is not
always easy to speak up against such referrals when so unwell and debilitated.
Even advocates and carers representing the patient who cannot speak for themselves have problems explaining to doctors and other healthcare parctitioners that certain
referrals or therapies are not suitable for someone with ME and Severe ME.
It's not always possible to be ready to provide doctors and
other healthcare practitioners with information about ME or Severe ME for a
hospital admission which is why we feel that having a few things ready ahead of
a possible ED or Hospital admission could be very useful to educate hospital
staff and inform them how to accommodate you best.
Please see some useful information below relating to the
most common problems we hear about from ME and Severe ME patients who have had
difficult experiences in hospitals or other care settings.
1. Do Not Confuse the Post Exertion Response in ME or Severe ME with Anxiety or a Mental Health Issue
Healthcare practitioners, please do not confuse the post exertion response/crisis in ME or Severe ME, which may include paralysis, seizures, fits, or unconsciousness, with anxiety or any mental health issue. Please become knowledgeable about the extremes in Severe ME and be prepared to know how to manage an ME patient who is having a post exertion response crisis.
Myalgic Encephalomyelitis (ME) is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Also all over body pain.
Overload phenomena is part of the complex pathophysiology of Severe ME as the body reacts to sensory inputs which it does not have the energy to manage.
Those unfamiliar with the pathophysiology of ME mistakenly interpret this as ‘anxiety’, which it is not.
The post exertion response crisis that occurs following any exertion, mental and physical, in Severe ME can result in horrendous features such as paralysis, seizures, fits, unconciousness.
Patients are often too ill to use a wheelchair or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration. Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.
Minimising the need to ‘react’ is essential as reaction causes a physiological response which affects the already out of balance central and autonomic nervous systems. Being forced to react results in an exacerbation of symptoms.
It is important to realise that at the severe end of the spectrum people with Severe ME don’t need to exert themselves for the phenomenon PENE to operate, there can be a critical response to the slightest movement by the patient or by the movement of a visitor to the patient's bedroom. Even simple brain activity can lead to worsening of illness in ME, e.g., hearing noise from outside the bedroom.
For very severely affected ME sufferers there is virtually no ‘safe’ level of physical or mental activity, orthostatic stress or sensory input; no level which does not produce a worsening of symptoms, and perhaps also contribute to disease progression.
Acknowledge the possibility that the person with Severe M.E. may suffer from:
(1) paralysis, which can be a state of partial or complete paralysis.
(2) seizures which are known to occur when the individual seriously deteriorates.
(3) unconsciousness which may happen as a result of serious deterioration & issues with the nervous system when being forced to respond to too much stimuli.
More information here
2. Care for People with Severe or Very Severe ME in a Hospital Setting
(a) The Need for a Quiet Room/Ward
There is a good reference to state the need for quiet for a Severe ME patient in the NICE Guidelines 2021 NG206, specifically the section on Care for People with Severe/Very Severe ME at 1.17.2.
(b) Issues of Noise, Light, Touch, Chemical & Movement Sensitivity in Severe/Very Severe ME
Carers, healthcare practitioners and other staff in
hospitals need to be aware of issues the person with ME/Severe ME/ Very Severe
ME may have with Noise, Light, Touch, Chemical & Movement Sensitivity.
Please see relevant information here: https://stonebird.co.uk/hypersensitivity.pdf
(c) Hospital Care for those with Severe ME
See NICE Guidelines 2021 notes on Awareness of Severe and
Very Severe ME (1.17) and its impact, and notes on Hospital Care (1.17.7):
(d) Supporting People with Severe Myalgic Encephalomyelitis (M.E.) in a Hospital Setting Notes by Greg Crowhurst
Key symptoms are presented along with possible service responses & treatment options.
The article, particularly pages 41 and 42, emphasises that this M.E. is often misunderstood but that it can be serious, & more research is needed to promote better understanding of the physical symptoms.
Please see the article, 'Supporting People with Severe Myalgic Encephalomyelitis (M.E.) in a Hospital Setting' by Greg Crowhurst here
(e) How Nursing Staff Can Support a Patient with Severe ME
(f) Hospital Transfer/Hospital Stay Notes
Please see the template for a summary about your needs when staying in a hospital. This template can be edited to take your specific needs into account, see template here
3. A Warning about Inappropriate Referrals to Therapy
(a) Physiotherapy
If you are referred to a physio in hospital or other care
setting by a consultant/doctor despite stating that you are unable to do any
activity, even minor exercise, unable to sit up in bed and/or leave your
bed, there are resources you or your carer or advocate could use to convey your need to rest and avoid activity, or avoid doing too much activity, in order to prevent deterioration, i.e. the difficult and horrendous post exertional response (PENE) in M.E. and Severe M.E.
- For example the NICE Guidelines section 1.11.14 (see b below)
- Physios For ME (UK) free handout, "How to work safely with people who have ME": https://www.physiosforme.com/onesheetprintout
(b) Graded Exercise Therapy (GET) or any incremental exercise therapy with a similar name
The NICE Guidelines 2021 state that it is not acceptable
to recommend a programme of fixed incremental exercise, such as Graded Exercise
Therapy to an ME patient. Nor should any form of physical activity or exercise
be presented as a cure: for example, as addressing imputed ‘exercise avoidance’
and/or physical deconditioning as a perpetuating factor in the patient’s ill
health.
Programmes developed for people with other illnesses, or for
healthy people, should not be offered to an ME patient. The NICE
guidelines piece re Graded Exercise which includes all activity, e.g. being
told to sit up to eat meals or read a book when unable, or being told to get
out of bed or told to do physio, etc.
"The [NICE] committee
concluded any programme using fixed incremental increases in physical activity
or exercise (for example, graded exercise therapy), or physical activity or
exercise programmes that are based on deconditioning and exercise avoidance
theories, should not be offered to people with ME. The committee also wanted to
reinforce that there is no therapy based on physical activity or exercise that
is effective as a cure for ME."
The NICE Guideline 2021 for ME at 1.11.14 states:
Do not offer people with
ME/CFS:
any therapy based on physical activity or exercise as a cure
for ME
generalised physical activity or exercise programmes – this
includes programmes developed for healthy people or people with other illnesses
any programme that does not follow the approach in
recommendation 1.11.13 or that uses fixed incremental increases in physical
activity or exercise, for example, graded exercise therapy (see box 4)
physical activity or exercise programmes that are based on
deconditioning and exercise avoidance theories as perpetuating ME/CFS
(C) Psychiatry
Default referrals to a psychiatric consultant or the psych
department in a hospital or other care setting is an inappropriate
referral for a person with ME or Severe ME given that ME is a multi-system physiological
illness, classified as a neurological illness. Most doctors are not ME knowledgeable, and psychiatric doctors certainly are not ME knowledgeable nor qualified to treat ME or Severe ME.
A referral to psych can harm individuals with ME in various
ways; it
- delays appropriate care
- puts the patient in a potentially harmful environment
- causes deterioration
4. Consent to Treatment
If you are being referred to physiotherapy and/or if you are being referred to psych therapy/management/consultation or any other therapy you are too debilitated for, or feel is not suitable for you there are measures you can take to protect yourself, please see more below.
Consent
What is Consent and why is it important?
Consent is the giving of permission or agreement for a
treatment, investigation, receipt or use of a service or participation in
research or teaching. Consent involves a process of communication about the
proposed intervention in which the person has received sufficient information
to enable them to understand the nature, potential risks and benefits of the
proposed intervention. Seeking consent should usually occur as an ongoing
process rather than a one-off event.
The HSE National Consent Policy
The HSE National Consent Policy describes how every person has the right to be involved in decisions about their treatment and care. A person must give their consent before any type of medical procedure, test, or examination. Consent should be sought throughout the course of care and treatment, and not treated as a single event. Each person should be supported to make their own decisions wherever possible.
The policy provides guidance on:
- defining consent
- supporting a person to make a decision
- capacity to consent
- refusing consent or when someone changes their mind
- emergency situations
- documenting consent
- Assisted Decision-Making (Capacity) Act 2015
More here
HSE National Consent Policy here
Consent to Treatment Statement
Medical practitioners cannot give a treatment to a patient
without the patient’s consent. Doctors Code of Ethics and the HSE’s National
Healthcare Charter make clear informed consent is required before any
treatment/medication can be given.
You could make a Consent to Treatment statement in writing,
sign it, get the signature witnessed, dated, copy to GP and any clinic to which
you are referred and always take with you on the day of an appointment/surgery/hospital
or ED admission.
Unless it is a doctor you know and trust who has satisfied
you that he or she regards ME as a physical illness, you could start every
consultation by asking them if they have read it, and agree, and that they
confirm they will see you and treat you in accordance with it.
Consent to Treatment Statement
I do not consent to being seen or treated by any doctor or health professional who does not regard ME (or my symptoms diagnosed on x date by doc x as ME) as a physical, neurological disease with physical origins.I do not consent to being seen by …. who regards ME as psychosomatic, psychological, psychiatric, MUS, a somatisation disorder or FND or similar.
(If the hospital do not comply they are working without your consent)
Complete the Consent to Treatment Statement to suit you, then sign it, print your name, date it, and ask someone to witness your signature by signing, printing their name and adding their address or job.
The Consent to Treatment Statement may be adapted for personal use. Please see template here:
Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay
There are a few questions below which you may consider asking a hospital
or doctor’s office to avoid a possible psych referral/ward stay, or to have
ready as a response if your doctor during a hospital stay sends a psych medic
to you for a chat/therapy/management. These questions are based on a letter originally used by
Prof. Steven Lubet (school of Law, US) in a letter to Hennepin Healthcare:
Does [Institution Name] have written guideline, procedures, or protocols regarding the referral of patients for involuntary psychiatric commitment? If so, kindly provide me with a copy, or direct me to a website where they are accessible.Have any [Institution Name] physicians or other professionals participated, within the past five years, in CPD courses or in-service training regarding ME and Severe ME? If so, kindly provide me with any materials for such CPD or training or direct me to a website where information is available.Are there any physicians or other professionals on staff at [Institution Name] who specialize in Myalgic Encephalomyelitis (ME) and Severe ME? If so, kindly provide me with their names and contact information.
Competent to Make Decisions
There are further options if you are concerned that at some
point in the future if you become very severely affected by ME a doctor may try
to get you sectioned in a psychiatric ward. In that case you might want your
doctor to write that he regards you as competent to make decisions about
your medical care; you can add that this is to remain in your notes to
stand in future until or unless you revoke it in writing.
Then copy the document to surgery and clinics and keep one
in your own file to take with you if you go into hospital.
Template Consent Form
The Consent Form template by Valerie Eliot Smith linked below can be revised with reference
to the HSE Consent Policy
HSE National Consent Policy: https://www.hse.ie/eng/about/who/national-office-human-rights-equality-policy/consent/
Valerie Eliot Smith's Consent Form template:
5. Essential Care Around Malnutrition in Severe Myalgic Encephalomyelitis (ME)
Malnutrition is one often overlooked but crucial issue that significantly
impacts the lives of individuals with Severe Myalgic Encephalomyelitis (ME). Patients with Very Severe ME can experience difficulty
maintaining their nutrition and hydration. In the most severe cases it is not
uncommon.
The most common reason for malnutrition in a Severe ME
patient is illness associated debility. There are a variety of other reasons which
we discuss in our piece on our webpage along with advice from experts in the UK
here:
Malnutrition -
There is brief mention of malnutrition in the NICE
Guidelines, 2021, under 'Dietary Management and Strategies' at 1.17.11 and
1.17.12 as seen below.
1.17.11
Monitor people with severe or very severe ME/CFS who are at
risk of malnutrition or unintentional weight loss because of:
restrictive diets
poor appetite, for example linked with altered taste, smell
and texture
food intolerances
nausea
difficulty swallowing and chewing.
Follow the recommendations on screening for malnutrition and
indications for nutrition support, in the NICE guideline on nutrition support
for adults.
1.17.12 Give advice to support people with severe or very
severe ME/CFS, which could include:
eating little and often
having nourishing drinks and snacks, including food
fortification
finding easier ways of eating to conserve energy, such as
food with softer textures
using modified eating aids, particularly if someone has
difficulty chewing or swallowing
oral nutrition support and enteral feeding.
Research into Malnutrition and Nutritional Needs in Severe ME is urgently needed to be able to create practical and appropriate protocols to make available to health agencies and hospitals.
6. Essential Communication with Severe Myalgic Encephalomyelitis (ME) Patients
Severe ME patients are quite likely to have communication issues because of debilitating symptoms, lack of energy, cognitive issues and the threat of deterioration following even the most minor attempts at speaking to and comprehending others.
If the patient is incapacitated, then a family member or carer must be relied
upon to “be the patient's voice,” and to imagine what the patient would say if
he/she was witnessing the current medical situation they are in.
Careful, thoughtful, respectful, open communication with patients and family members is essential. Knowing what outcomes
would/would not be acceptable to the patient can inform the medical team on how
best to provide guidance in medical decision-making through “palliative
paternalism”.
Autonomy is key. Autonomy should be the current gold standard approach to patient/carer communication in Severe ME, to the point that patient preference dictates care.
Getting the balance right between patient autonomy and medical paternalism is key.
Please see ‘A General Note to Healthcare Providers about Care in Severe Myalgic Encephalomyelitis (ME) in Hospitals' which includes tips on communication in the document via link here
