About Myalgic Encephalomyelitis (ME)
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- Myalgic Encephalomyelitis (ME)
- Cardinal Feature - PENE
- Potential Symptoms
- Severities
- Diagnosis
- Testing
- Management
- Heart Rate Monitoring
- Severe ME
- Management in Severe ME
- Malnutrition in Severe ME
- Adrenaline Issues
- Paralysis
- Oesophaegeal Spasms (swallowing issue)
- Excessive Thirst
- Visual Disturbances
- Sleep Issues
- Caring for Severe ME Patients
- Support & Entitlements for Carers
- Reasonable Adjustments in Hospital
- Paediatric ME
- Home Education (Paediatric ME)
- International Guidelines: ICC & ICP
- Tools for Hospital/Care Setting
- Communication Cards for Hospital Setting
- Public & Community Supports
- Mobility Aids
- Disability Payments
- Sunflower Lanyard
- Schemes for ME Associated Disabilities
- Communicating with Doctors
- Information for Healthcare Professionals
- Physio Care
- Anaesthesia & ME
- For Parents, Carers, Family & Others
- Consent
- Appeals & Complaints (HSE etc)
- FOI
- Rectifying Medical Files
- Current Situation with ME Healthcare in Ireland
- Harmful Therapies (GET)
- Income Protection & CPAD Assessment
- Threats to ME Healthcare
- Mistreatment of ME by Psychiatry
- Diagnostic Overshadowing
- ME vs CFS
- Research
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Wednesday 17 July 2024
FND is NOT an Appropriate Diagnosis for ME
Monday 1 July 2024
Communication Cards
Communication Cards
For use in a hospital/other care setting when communicating between Severe ME patient and others is difficult.
The following linked communication cards could be downloaded, printed, laminated and used by an individual who finds communication difficult or impossible.
The patient could use a marker (not permanent) to indicate their need(s) to a carer/nurse/other, then have it rubbed out to use again.
For someone with Very Severe ME it may be necessary for carers/nurses/others to point at the choices on the card to figure out the individual's need(s). It would be important that the carer/nurse/other would set up some kind of routine for the individual to be able to indicate their choices, maybe a raise of a finger to indicate 'yes' or whatever the individual is capable of.
• Symptoms: https://batemanhornecenter.org/wp-content/uploads/2022/01/B_W-Symptoms-and-Sensitivites.pdf
• Emergency & Severe Status: https://batemanhornecenter.org/wp-content/uploads/2022/01/B_W-Emergency-and-Severe-Status.pdf
• Blank Cards (customise to communicate your needs):
https://batemanhornecenter.org/wp-content/uploads/2022/01/B_W-Blank-Cards.pdf
Further health information sheets are available from the Bateman Horne Centre via the following link: https://batemanhornecenter.org/education/mecfs-guidebook/
Friday 21 June 2024
Supporting Individuals with Severe ME in a Hospital or Other Healthcare Setting Information Pack
Information Pack - Making Reasonable Adjustments to Support Individuals with Severe ME in a Hospital or Other Healthcare Setting
Reasonable Adjustments
About the Information Pack
Other Resources
Personalising the Document
Other Formats
Friday 24 May 2024
The Lived Experience of Severe ME - Severe ME in Young People
" She had hyperacusis and noise had to be controlled in her room, within our house and outside the house - if this was beyond our control ear plugs and industrial strength ear-defenders had to be worn however these caused their own problem.
Noise would cause her extreme pain and myoclonic seizures.
Her skin was hypersensitive to touch and even the gentlest touch could cause agony. I could stroke her cheek and head and sometimes hold her hand. We had a special sign for a cuddle as I was unable to cuddle her anymore.
She could only tolerate one person in her room at a time due to movement hypersensitivity which would cause confusion and increased pain. Even pictures on her wall and items in her room could cause confusion so had to be kept to a minimum. When the district nurses came to change her syringe drivers she had to have an eye mask on.
She was in severe pain always despite being under the care of our local hospice at home and on three syringe drivers delivering extremely high doses of pain relief, anti sickness and neuropathic medication 24 hours a day.
Her hospice doctor said she had never witnessed such suffering and felt so helpless.
And pain, pain and more pain, paralysis and isolation, never the simple joy of food, drink or conversation, never being able to give or receive a cuddle, never seeing the sun or feeling a gentle breeze on your skin just pain and darkness and repeat."
Resources for Educating Carers, Doctors and GPs about ME & Severe ME in Young People
International Paediatric Guidelines
Friday 17 May 2024
Avoiding Harmful Management & Damaging Referrals in Hospitals & Care Settings & Other What To Dos and Not To Dos
Avoiding Harmful Management, Therapies & Damaging Referrals
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
(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.
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
(c) Hospital Care for those with Severe ME
(d) Supporting People with Severe Myalgic Encephalomyelitis (M.E.) in a Hospital Setting Notes by Greg Crowhurst
(e) How Nursing Staff Can Support a Patient with Severe ME
(f) Hospital Transfer/Hospital Stay Notes
3. A Warning about Inappropriate Referrals to Therapy
(a) Physiotherapy
- 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
any therapy based on physical activity or exercise as a cure
for ME
(C) Psychiatry
- 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
The HSE National Consent Policy
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
Consent to Treatment Statement
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.
Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay
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
Template Consent Form
5. Essential Care Around Malnutrition in Severe Myalgic Encephalomyelitis (ME)
Malnutrition - NICE guidelines 2021
1.17.11
restrictive diets
poor appetite, for example linked with altered taste, smell
and texture
food intolerances
nausea
difficulty swallowing and chewing.
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
Communication Cards by the Bateman Horne Centre
The following linked communication cards could be
downloaded, printed, laminated and used by an individual who finds
communication difficult or impossible. Once laminated the patient could use a
marker (not permanent) to tick what applies to them, then rub it out, and use
again.
· Comfort: https://batemanhornecenter.org/wp-content/uploads/2022/01/B_W-Comfort.pdf
·
Blank Cards (customise to communicate your needs):
https://batemanhornecenter.org/wp-content/uploads/2022/01/B_W-Blank-Cards.pdf