- Prepare a brief history that summarizes your experience with suspected ME. For example, write down:
- a list of your symptoms
- a list of your worst/most disabling symptoms, prioritise
- when your symptoms started
- what makes your symptoms worse
- how the symptoms affect your ability to be active
- how often symptoms occur
- what happens after you have been active, i.e. the post exertion response (PENE)
- how long after you are active do you start to suffer a post exertion response (PENE)
- how long do you suffer from the post exertion response (PENE)
- how does the post exertion response (PENE) & other symptoms prevent you from doing usual activities/work/socialising/getting out of bed/getting to the bathroom/preparing meals/washing yourself - this will depend on severity of illness
- Describe examples of your worst days, outlining what is happening/how debilitating symptoms are.
- Prioritise symptoms - select your most important issues/most challenging symptoms and write them down. Review how to present your symptoms factually, clearly, quickly. Sometimes symptoms are lost in a list that’s too long so prioritising is important. Bring your list to your appointment to go through your symptoms and issues. Most importantly, put your symptoms into context. Ask for help in dealing with your symptoms.
- Write a list of medications and supplements you are taking. Bringing your lists with you will help keep track.
- Consider bringing a family member or friend with you for support. This person can also help you take notes and remember what happened at the visit with your doctor or other healthcare provider. The provider you see could be a doctor, nurse, nurse practitioner, or other type of healthcare professional.
It may take more than one visit to your doctor to:
For Attending the appointment
- Creating an ME Accessible Healthcare Setting - Information Sheet for Doctors and other Healthcare Staff by ME Advocates Ireland (MEAI)
For Aiding a Diagnosis
- How ME is Diagnosed, from the International Consensus Criteria (ICC)
- International Consensus Primer (ICP)
- Early Diagnosis
- Information about PENE, the cardinal feature of ME
- De Paul Symptom & Severity, and PEM Questionnaires
- Bells Disability Scale
- Simple alternative questionnaire to determine if the patient meets the ICC Criteria
For Managing & Treating
People with Myalgic Encephalomyelitis (ME) have a limited amount of energy and suffer from a post exertional response, i.e., PENE. Helping them conserve their energy and providing an ME- friendly environment will reduce the impact of attending essential medical appointments. See MEAI Information Sheet with tips for the healthcare provider to aid a person with ME attend their medical appointment/hospital.
- International Consensus Primer (ICP) 2012
The International Consensus Primer (ICP) was written in 2012 to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of current pathophysiological findings upon which the International Consensus Criteria are based.
A comprehensive clinical assessment and diagnostic worksheet enables clear and consistent diagnosis of adult and paediatric patients world-wide.
The treatment and management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include non-pharmaceutical and pharmaceutical suggestions.
Patient self-help strategies provide recommendations for energy conservation, diet, and more.
Educational considerations for children are also included. See the ICP here
Relevant ICP Content:PathophysiologyPost-Exertional Neuroimmune Exhaustion (cardinal feature), Neurological Abnormalities, Immune Impairments, Energy Production and Ion Transport Impairments ...... pages 2-6Clinical Assessment and DiagnosisPost-Exertional Neuroimmune Exhaustion (PENE pen׳-e) (compulsory), Neurological Impairments, Immune, Gastro-intestinal & Genitourinary Impairments, Energy Metabolism/Ion Transportation Impairments, Clinical & Physical assessments .......pages 6-11Lab TestsLaboratory/Investigative Protocol: Diagnose by criteria. Confirm by laboratory and other investigations ......pages 11-12Paediatric ConsiderationsEach child (all young people) will have his/her own unique combination of the ME criterial symptoms. The onset of ME in children often occurs around twelve years of age but it has been diagnosed in a child who was two years old ......pages 9 & 19
Early Diagnosis is essential in ME which may lessen the severity and impact.Early diagnosis should enable a comprehensive plan of management to be agreed between the patient and doctor which should cover symptom management and symptom relief, which may lessen the severity and impact.
NB: The 6-month waiting period before diagnosis is not required as per the ICC 2011.
- The DePaul Symptom & Severity, & PEM Questionnaires
Along with the Primer patients and doctors could use several questionnaires, which are based on research, to aid a diagnosis. These include the De Paul Symptom & Severity, PEM and Paedriatric questionnaires and the Bells Disability Scale.
All questionnaires can also be used for management purposes following diagnosis to track impact of symptoms and severity, to identify new symptoms and keep a record.
- Bells Severity Scale
A good scale that could be used along with the categories Mild, Moderate, Severe, Very Severe, Profound, to determine near exact range, is the Bell's Disability Scale. Different people suffer in different ways but the scale gives an idea of the level of disability. It may be the case that it doesn't reflect your severity exactly but it is a useful tool for some patients to get across the extent of their ME severity to medics & others.
-Simple Alternative Questionnaire to determine if the Patient Meets the ICC Criteria
An online questionnaire was developed by Schweizerische Gesellschaft für ME, a patient association in Switzerland, to help determine whether the diagnosis of ME according to the International Consensus Criteria (ICC) is applicable to a patient. This tool could be used as an easier/shorter alternative to the De Paul symptom and severity questionnaires by the doctor as well as the patient: ICC Questionnaire
For Managing & Treating
More on the these important management strategies and others via links below:
- Symptom and Severity DSQ-2 Questionnaire
- Post Exertional Intolerance DSQ-PEM Questionnaire
- Paediatric Questionnaires:
- Bells Disability & Severity Scale
Personal Care Plan
- would outline the ME patient’s illness and needs
- would outline the difficulties the patient has being in the unfamiliar environment of a hospital where there are many potential ‘harms’ to their health,
- would warn medics of other difficulties that might come about,
- would be an individual file on each patient put together by the patient and/or carer, together with information added from the patient’s primary carer and the specialist consultants the patient attends,
- would include strict protocols to make arrival, admission, stay, and discharge, as well as medical assessments and procedures as easy as possible on the person with Severe ME,
- would go some way to help prevent relapse, paralysis, and other horrific symptoms,
- would be different and personal to the individual patient's needs.
It is important to remember that the ME patient may carry their care plan file for any hospital admission including ED, or their plan may be in their medical file held by a doctor.
Please see sample Personal Care Plan
Based on the HSE’s 'National Guidelines on Accessible Health & Social Care Services' (2014), the patient's 'Needs Statement' can be used during a hospital admission or other care setting, when the patient is faced with the problem of how to explain ME & their individual needs to healthcare staff.
Please see sample My Needs Statement
Further to the tests to be done, as suggested in the ICP, there is further information re testing in post by ME Advocates Ireland (MEAI) here
- More Useful Tools
- Useful Information Sheet
- Consent To Treatment Statement & Form
Useful Information Sheet
Consent to Treatment Documents
Consent to Treatment StatementDrs Code of Ethics and the HSE’s National Healthcare Charter make clear informed consent is required before any treatment/medication can be given.‘Why are you consenting to be seen by doctors who do not believe ME exists?You could make a Limitation of Consent statement in writing, sign it, get the signature witnessed, dated, copy to GP and any clinic to which you are referred and always take on the day of an appointment/surgery/other as well.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.End of gaslighting, end of harmful practices.The magic words are ‘I do not consent ‘ ie 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 y 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 they do not comply they are working without your consent.Complete the document to suit you, then sign, print name, date and ask someone to witness your signature by signing, printing their name and adding their address or job.There are two further options, if you are concerned that at some point in the future if you become Very Severe a doctor may try to get you sectioned in a psychiatric ward.In that case you might want your doctor to sign to say that he regards you as competent to make decisions about your medical care, and you can add that this is to remain in your notes to stand in future until or unless you revoke it in writing.The name and address of a solicitor is useful in case of questions, but you could simply ask your solicitor to witness your signature.Then copy document to surgery and clinics and keep one in your own file to take with you if you go into hospital.The Consent to Treatment Statement may be adapted for personal use.
Consent to Treatment Form & GuidanceThe article via link below by Valerie Eliot Smith provides a useful Consent Form template but it needs to be adapted for the HSE & Irish health services.The HSE has a Consent Policy so the template Consent Form can be revised with reference to that policy.The useful template is included below for you if you have an immediate need but it needs:a) Irish own clinical guidance reflecting Irish health services and experiencesb) Irish Limitation of Consent forms which reference HSE, Children’s Hospital Ireland and other Voluntary Hospital Group consent policies.It is a useful starter for you if you need protection urgently.Limitation of Consent to Treatment Form template offers an example of how to communicate concerns about being forced into treatment by medics who are not familiar with ME.