ME/CFS is a specialist field. ME/CFS patients commonly react counterintuitively to both medications and therapies. Consequently, you will not be able to rely on your non-ME/CFS professional training when treating people with ME/CFS. You will need to:
- Keep an open mind and research ME/CFS.
- Be prepared to learn.
- Always listen to the patient.
If you are not prepared to do these things, please do not accept the patient. There is a high likelihood that you will cause harm. Many people with ME/CFS have been harmed by doctors and therapists who do not understand the complex, physiological nature of ME/CFS; and that outdated treatments can shift a fairly functional patient into severe disability and complete, bedbound incapacitation. Health professionals rarely receive feedback that this has happened, because these patients are too ill to seek medical attention. They simply disappear.
Rapport
It is essential for health professionals to establish rapport. Many people with ME/CFS have no reason to trust health professionals. In the absence of trust, patients will not reveal the true scope and severity of symptoms. Consequently, you will not understand the patient or help them to manage a severe and disabling health condition. You may also dissuade them from seeking help from another health professional.
These measures will help you to establish rapport:
- Treat ME/CFS patients with respect. Listen to what they say. Give them time to describe their complex symptoms and health history.
- Do not minimise or gaslight symptoms. We are your clients. We do not expect to pay to be denigrated, disrespected and abused.
- Understand that if you do not understand how a single patient could have so many symptoms, that is your shortcoming; not the fault of the patient.
- Understand that women are often poorly treated by the health system. It takes us four times as long as men to receive an ME/CFS diagnosis. We are often dismissed and disregarded by health professionals. It is your job to recognise the medical bias against women and to counteract it.
- Acknowledge that medical textbooks and training rarely describe ME/CFS. When they do, the description is usually brief, inaccurate, and at odds with the last quarter century of medical research. These deficiencies do not mean that the disease does not exist. ME/CFS patients have often heard medical professionals state or infer that, if they were not taught about ME/CFS, it cannot be a physiological disease. This is a logical fallacy (the personal incredulity fallacy). We do not expect medical professionals to be all-knowing. We do expect health professionals to understand that present day medical knowledge has limits, and that some aspects of health care training will be falsified in the future. If you do not understand ME/CFS, please do not blame or dismiss us. Instead, approach us with humility and a willingness to learn.
- Understand the immense body of knowledge held by many ME/CFS patients. ME/CFS patients hold more undergraduate and postgraduate degrees than the general population. We often hold professional qualifications and have worked at a high level in our careers. We have often been high level managers, accountants, system engineers and scientists. Many of us read ME/CFS research and have accumulated a deep understanding of ME/CFS. We are consulting you because you are a gatekeeper to the medical system, or an expert in your field. We are not passive; we are full participants in our health care and hope to work with you to manage our health conditions.
Accessibility
Many people with ME/CFS find health care inaccessible.
- Consider offering an online booking system. Many people with ME/CFS find it easier to book online than to make a phone call. Phone calls require social communication, and patients may need to wait on hold with grating music that triggers sensory sensitivities. People with severe ME/CFS may not have the energy or cognitive capacity to speak on the phone. Online bookings are often easier to manage. Alternatively, allow patients to request a booking via email. Offer them a few booking slots and they will select one.
- Be prepared to work with carers. People with very severe ME/CFS have lost the ability to leave their bed, or to communicate. They are completely dependent on care for toileting, feeding and washing.
- Ensure that people with ME/CFS do not experience a long wait in the waiting room. Many of us are sensitive to light, sound and smell. Furthermore, standing or sitting upright may drain our capacity before you see us. Try to ensure that people with ME/CFS are seen quickly. Ask reception to notify patients in advance if you are running behind. Consider turning down music, and dimming lights in a corner of the waiting room. Online check-in and payment systems can relieve patients of the need to stand in line.
- Offer telehealth. This is essential for housebound and bedbound patients.
- Offer in-home appointments, therapy, blood collection and vaccinations.
- Please understand that, sometimes, we may need to cancel appointments on the day. We may have rested for days before or after each previous appointment. You have seen us at our absolute best; our daily capacity is usually much lower than you might believe. Extended symptom flares can be triggered by lifting a single item that is too heavy for us, speaking on the phone for too long, eating the wrong food, or a new cleaning product that has been introduced into the house by a cleaner. We often crash suddenly and unpredictably. Please do not penalise us if we need to cancel an appointment at the last minute – the random, capricious nature of ME/CFS is terrifying. We are already dealing with so much, without being penalised for something that we cannot control.
- Wherever possible, bulk bill people with ME/CFS. It is common for us to see multiple health professionals and specialists; to need non-Medicare-funded scans and diagnostic tests; and to take a combination of compounded or off-label medications and supplements that are not covered by Medicare. We are often completely unable to work; able to work only a few hours a week; and reliant on the disability support pension. Most people with ME/CFS are (inequitably) denied access to the NDIS. Our average out-of-packet health care costs are between AUD$13,000 and $25,000 per year, and our average annual loss of earnings is between AUD$65,000 and $86,0001. So, please bulk bill if you can.
- Ensure that people with ME/CFS understand that they can manage many of their medications via an app (I use MedAdvisor, but I believe that different pharmacists use different apps); order medications online; and have their medications delivered. Then, provide escripts that can be uploaded to the app.
- Do not assume that your patients are mobile or able to drive. Personally, I need to book a support worker for each appointment. People with ME/CFS often rest for a couple of days before an appointment, to ensure that they can function during the appointment. You are seeing us at our absolute best. Afterwards, we may be incapacitated for a week or more. There are times when I do not leave my house for weeks. Other people may leave their house once a year, or not at all. Please do not advise us to access products or therapies that are inaccessible to us. That is disheartening, and we have enough to cope with.
Accommodating Cognitive Incapacity
Brain fog and cognitive incapacity is common in people with ME/CFS. We may not remember what we need to tell you, or to ask you. We may not remember your reply. These provisions will help us:
- Suggest that your patients provide their health history in writing, in their preferred format. This will reduce the amount of communication required in their first appointment. I keep a document that describes my diagnostic history; medications; supplements; operations; food, medication, chemical and sensory sensitivities; health providers; most recent follow-ups; and family situation. I can provide this to new health professionals, and it relieves me of the need to recite my long and complex health history. Many people with ME/CFS have lost the ability to produce such a document. However, they may be able to fill in one of these categories. Then, they can provide it to other health professionals.
- Give us time to speak. Despite preparing for an appointment by resting for days in advance, we may struggle to construct sentences or to recall the information you are requesting. Many of us will require time and patience.
- Consider allowing recordings of appointments. People with ME/CFS may lose the capacity to understand or process what you are saying at some point during the appointment. Many people with ME/CFS struggle to remember and recall information. Allowing recordings will allow patients to play the appointment back.
- Even better, supply detailed notes. Type your recommendations into the computer during the appointment and email or print them. Include everything that the patient needs to know. Seriously, we may remember very little of what you said. Include information about how and when to take medications or supplements. Describe how to obtain the medications or supplements if they need to come from a specific supplier. Write down how to prepare for blood collection or procedures. Provide printouts that describe exercises. Assume that we will remember nothing!
- We do not have the capacity to chase you. Please ensure that your paperwork is in order. For example:
- Provide us with the referrals that you have committed to.
- Make sure that referrals have been faxed to the right person in the right place.
- Follow-up with the health professionals you have said you will contact.
- Write the letter to our GP.
- Do not ask us to return another day to collect a referral. Provide it to us then and there; or email it; or mail it to us.
- If there is a problem with a prescription, sort it out. Do not expect us to have the capacity to troubleshoot it.
- Remember that cognitive incapacity does not indicate low intelligence. The information is in there. Many of us are highly intelligent and extremely analytical. However, these traits may be invisible to you when we have over-exerted and are experiencing a symptom flare.
- Help us to coordinate our complex conditions and inform our many health professionals by uploading results and reports to My Health Record, the ACT’s my Digital Health Record or equivalent.
- Please, do not engage in social chitchat. Communication is exhausting, and many of us lack the capacity for unnecessary conversation.
First Appointments
After establishing rapport:
- You will need to take a detailed medical history. Depending on length of illness, the history may be long and complex. Please provide appointments that are long enough to accommodate this.
- It is important to acknowledge the wide variety of ME/CFS presentations. It often seems that ME/CFS finds our genetic weaknesses. We may display a broad array of autonomic, gastrointestinal, cognitive, mitochondrial and autoimmune dysfunctions. One patient may be more sensitive to physical exertion, while another is more affected by cognitive exertion. A particular medication may be helpful to one patient and harmful to another. This is why listening is so important.
- Please, do not suggest graded exercise therapy and a psychologist. Never suggest that ME/CFS is in the patient’s head. To be clear, these suggestions are ignorant and cruel. Canada, the UK and the US have accepted that these therapies are inappropriate and likely to cause harm. By definition, people who respond to graded exercise therapy and cognitive behaviour therapy do not have ME/CFS. This post explains why – https://mecfs.au/racgp-recommendation-of-graded-exercise-therapy-for-me-cfs/.
- Proceed carefully, monitoring the effects of medications. Some patients may need to start with extremely low doses of medications and titrate upwards. Others may have rare and counterintuitive reactions to medications. Expect the unexpected!
- Likewise, take care with therapies and bodywork (see https://mecfs.au/me-cfs-treatments/). For example, people with moderate ME/CFS may tolerate 20 seconds of exercise to begin with. Similarly, massage may cause increased pain and reduced functional capacity for several days. Tread carefully and assume nothing. Yes, ME/CFS is difficult to treat, and you may find it frustrating. But, you get to go home at the end of the day and escape from it. We don’t.
We Hide our Problems
When treating a person with ME/CFS, is it important to understand what you cannot see! Please bear the following in mind:
- People with ME/CFS commonly rest for a couple of days before an appointment. You are seeing us at our utmost best! Afterwards, we may crash for a week or so. For many of us, this is the price we pay for leaving the house.
- Therefore, our presentation at the appointment is not representative of our daily function, or our general capacity. We may seem relatively normal. We may appear to be alert and communicative. You cannot see the pain and dysfunction that we are about to experience, or the severity of our symptoms. Please do not fall into the trap of thinking that we are able-bodied and healthy. We are not!
- It is important to understand the difference between ability and capacity. We may be able to leave the house… but only once a week, or once a month. We may be able to sit upright… for three hours each week. If we use up those three hours in our appointment with you and in the waiting room, we may struggle to feed ourselves for the next seven days. Our energy systems are broken. We are like phones with failing batteries that can only hold a tiny amount of charge and will not recharge overnight. As an outside observer, you can’t see that the battery is damaged unless the phone switches off. We pull out all stops to ensure that that will not happen during the appointment.
- We are unlikely to make an appointment with you unless we believe that we can attend without triggering extreme postexertional symptom exacerbation. Postexertional symptom exacerbation usually involves a symptom flare and some measure of incapacitation. Our pain levels may spike. We may forget how to dress or make toast. We may struggle to leave our beds to wash or reach the toilet. Our moods plummet. The specifics depend on the severity of illness. Flares can be terrifying, as we lose our ability to fulfil our basic needs. If we’re going through an extended bad patch, we may cancel our appointments or never make them in the first place. You won’t see us. The severity of our illness becomes invisible to you.
- If we start to lose function during the appointment, we will try to hide it. We do not want you to think that we are depressed or drugged or stupid. We want you to take us seriously. So, we try to sit upright, and to focus and remain alert. This will cost us – we’ll pay for it later.
- We manage our health professionals. Personally, I book appointments with health professionals for problems that I think they can understand and deal with. Revealing the full extent of my disability is too risky – it could bias them against me. This may sound harsh, but I have been trained by health professionals to expect ignorance, arrogance, gaslighting and dismissal. As a woman, I expect to be written off as a hysterical hypochondriac. Therefore, I avoid revealing the complexity of my medical problems and tell health professionals only what I think is relevant to the problem at hand.
- Likewise, we under-report our symptoms. Most people with ME/CFS are women. To avoid the hysterical hypochondriac paradigm, we avoid displaying emotion and minimise our symptoms. We may report daily 6/10 pain as ‘a bit of pain’. I won’t tell you about it at all unless I’m in too much pain to sleep. Likewise, I know that if I tell you that I can’t get out of bed, you’ll likely assume that I’m depressed. In reality, I may be hungry, but be unable to remember how to make breakfast, and so I stay put. But, believe you me, I’m monitoring your reactions. The moment I catch a dismissive look or read the disbelief in your tone of voice, I will backtrack and remove myself from your clinic. You’ll never hear about the real reason why I can’t get out of bed. You’ll never see me again. I have assessed you as unsafe and I will protect myself from you.
- Many of us give up on the health system for years at a time. Either we can’t see the point any more, or are too sick to access health care. Many of us have so little capacity to address our basic needs. Why spend it on a pointless hunt for help when we’ve been disappointed so many times before? You will likely never see the people who have given up on the health care system, or the bedbound people who are completely dependent on care.
Spread the Word!
ME/CFS is a devastatingly under-recognised, under-researched, under-treated and stigmatised disease. Please help us by talking to your colleagues about it. Share resources and discoveries with them, and explain your experiences. ME/CFS patients have been invisible for too long. We have lost our careers and our wellbeing; our lives have been stolen from us. You can help us, simply by talking about us.
- Close S., Marshall-Gradisnik S., Byrnes J., Smith P., Nghiem S., & Staines Don (2020). The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort, Frontiers in Public Health, 8. https://doi.org/10.3389/fpubh.2020.00420 ↩︎