The Top 10 Things I Would Tell Someone With Severe ME: For Patients or Caregivers
What Is Severe ME?
Myalgic Encephalomyelitis (ME) is a debilitating neuroimmunological disease most often triggered by a viral infection. Severe ME refers to 25% patients with ME who are housebound and/or bedbound.
Severe ME patients suffer from many symptoms the most important of which are:
Post Exertional Neuroimmune Exhaustion (PENE) - Also known as Post Exertional Malaise (PEM) or a crash, this symptom is triggered by any mental or physical exertion which in some cases can be as little as sitting up or reading an email. It worsens every other symptom including some or all of...
Migraine and sensory sensitivities to light, noise and scent.
Hypersensitivity to chemicals and medications, new food intolerances or allergies.
Dysregulation of hr and blood pressure, low blood volume causing dizziness & lightheadedness especially when upright.
Temperature dysregulation, flushing, inappropriate sweating or inability to sweat.
Severe fatigue, extreme muscle weakness & periodic paralysis.
Chronic pain including chronic headache, feeling poisoned, nerve pain, bone pain, joint pain & muscle pain.
Shortness of breath and air hunger.
Gastrointestinal distress.
Flu-like symptoms: nausea, malaise, fever, sore throat etc.
Cognitive dysfunction, short-term memory loss, difficulty recalling words, difficulty with analytical tasks, mood swings, anxiety & depression.
This is only a sample of some of the most common and debilitating symptoms. Symptoms vary by patient and by comorbidities.
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For Patients & Caregivers
This guide is a list of the top 10 things I would immediately tell someone with severe ME to try to do. In the case of patients too severe to read or act on these points themselves they are what I would recommend to their primary caregiver.
Severe ME can range from patients who are able to walk around the house occasionally and live mostly independently, to patients who are near comatose, dependent on IV fluids and tube feeding to survive. This guide is for all of the above.
Severe ME is often described as "living death." The hardest part of the diagnosis is often not the symptoms themselves but accepting that your life as you knew it is over. This is made even harder by doctors who do not understand the illness or claim the patient is faking or depressed.
Before any of the tips on this list can help you, you need to accept the reality of severe ME. Keep hope of a cure, keep hope of recovery, but understand that you need to listen to your body and plan your life around a very serious illness that cannot be wished away.
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Learn To Rest Agressively
Exertion is the trigger for worsening all symptoms in ME. You must learn to rest completely. This means blocking out light, noise and most importantly stress. If you are worrying you aren't resting. Meditation is often helpful, as can be tools like hr monitors and timers that help you avoid working too long or hard. Sleeping as many hours as your body will allow is also important.
Get Help Immediately
In order to rest as aggressively as possible you need help. This can be in the form of living with family, government assistance, mutual aid and support from friends. Ideally some combination of all of the above. Accessing help for severe ME is hard and sometimes impossible but it is also lifesaving. Use the resources provided at the end of this post.
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3. Follow Bateman Horne Center, Standford ME/CFS Center & Open Medicine Foundation
It is highly unlikely your doctor will know anything about treating ME. Ask them to read and follow the 2021 Clinician Coalition Guidelines for ME and 2023 Mayo Clinic Proceedings. Closely follow the work being done by Bateman Horne Center, Standford ME/CFS Center and Open Medicine Foundation to keep up to date with the latest research and experimental treatment.
The blog Health Rising by Cort Johnson often covers papers and studies by these organizations in ways that may be more accessible for those without scientific background.
4. Get Your Commorbidities Diagnosed & Treated
In the case of severe ME patients almost always have "complex chronic illness." This means they suffer not only from a single diagnosis (ME) but from a constellation of connected issues. The more you understand and diagnose the specific ways ME and your other conditions affect you and interact the more effective treatment you will be able to access.
Ideally, a full workup should be done by a: neurologist, rheumatologist, cardiologist, endocrinologist and immunologist and if required a gastroenterologist and therapist. This may take years to do and should not be rushed at a pace where it causes severe symptom exacerbation.
Start by finding a good GP or NP who will treat you primarily or entirely at home. If bedbound ensure they will write for home pathology collection. From this base, you can then slowly reach out to more specialists always taking care to ensure their guidance is safe for someone with severe ME (ie. Will not cause severe PENE).
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5. Get Symptoms Managed
The most essential medical professional on your team is a GP who can prescribe symptom management. This commonly includes: pain management, anti-nausea drugs, sleep aids, HR and BP management, and migraine/headache medication. Some experimental drugs like low-dose naltrexone can be prescribed by your GP as well referencing Bateman Horne Center for a list of potentially useful options.
6. Build A Routine
In addition to accessing palliative care, you need to build a routine that minimizes your symptoms and establishes stability in your life. The predictability of a routine can also improve your ability to rest and pace effectively. Key items to consider are:
-Accessing nutritionally dense food with as little work as possible
-Maintaining basic hygiene including dental hygiene.
-Maximizing sleep and rest time.
-Planning medication schedule and medical admin like pharmacy pickups and telehealth appointments.
-Giving yourself something small to look forwards to like a tiny bit of crafting or media each day when possible.
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7. Take Care Of Your Mental Health
Severe ME is absolutely soul-crushing and it is completely normal to feel depressed or suicidal because of it. Accessing healthcare to treat your symptoms will help. However, due to how under-resourced and stigmatized ME is this is not always possible and even with the best resources it is not always enough to make life enjoyable or even bearable.
Therefore, taking care of your mental health is absolutely essential to minimize the suffering that happens because of the unavoidable pain of this illness. Meditation, gratitude journaling, therapy, peer support and in extreme cases, medication are all valuable tools for improving mental health.
Patients with severe ME are often told they are "just depressed" this is a lie. It is essential to find a therapist who will take your ME seriously the same way they would treat a diagnosis of cancer or MS. But just because severe ME is not depression doesn't make the depression it causes any less real.
Depression may be a rational response to severe ME, but is it rational to continue to suffer more simply because it is your mind's first reaction? Choosing to improve and prioritize your mental health in no way delegitimizes your physical health. So take the time to learn your own mind better and do whatever you need to to keep it as happy as possible.
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8. Avoid The Hospital
The hospital is one of the most dangerous places for anyone with severe or very severe ME. It is loud and chaotic, high-stress, and full of infection risks and overflowing with doctors who know nothing about how to treat patients with ME. If you crash in a hospital you will almost certainly remain crashed until you get out. To make things worse, patients with severe ME have often been sectioned as mentally ill. Meaning if you go into a hospital, you cannot ensure a right to refuse treatment or leave.
Avoid the hospital at all costs unless it is a life-threatening emergency. If you do have to go into hospital bring a patient advocate with you and print out copies of the NICE Guidelines or Mayo Clinic Proceedings on ME. Be prepared to be less able than usual to self-advocate.
9. Be Prepared For The Worst
Severe ME makes patient frail. What this means medically is that your body is vulnerable. To infection, to malnutrition, and to other medical emergencies. While you may feel on the brink of death people with severe and very severe ME do often live for decades with the illness. However, they can also die suddenly from things that wouldn't kill a healthy person simply from the severe overexertion it puts on their body.
Therefore, I highly recommend that anyone with severe ME be prepared for both medical emergencies and death. This means having a binder that includes all your medications and supplements, information about your conditions, and a letter from your GP explaining what accommodations you need should you be forced to go to hospital. The binder should also include a medical advanced directive and power of attorney
Some patients with very severe ME may also seek access to MAID or assisted suicide. This is a very personal decision and should only be made final after all possible comorbidities and palliative care options have been exhausted. However, it is also worth noting that it is a long bureaucratic process so if you desire the option it should be investigated long before you are desperate.
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10. Join The Community
Whether you are a patient or caregiver, the severe ME community is an absolutely invaluable resource for surviving this illness. Many of the common symptoms and problems faced by patients with severe and very severe ME are barely or not at all documented in the medical literature, yet readily accessible and shared about within the patient community.
Patient recommendations are also essential for finding the small number of well-educated GPs and specialists who will take on and treat patients with severe ME, especially those who are bedbound. This is why in addition to following global and national advocacy and research organizations it is very important to join local Facebook groups or group chats.
While the ME community broadly is a helpful group to be apart of, it is also important to join severe ME-specific groups if you are housebound or more severe. This is because the tips that are helpful to patients with mild-moderate ME may not be possible for patients with severe ME. More specific tips about things like bedpans, home nursing, surgical procedures, malnutrition, sensory control and so forth are often only talked about in severe ME-specific spaces. Additionally, all ME is a severe illness, and so it is important to have spaces where patients can express feelings like jealousy at someone who can work part-time without minimizing the suffering and experiences of patients with less severe but still lifechanging illness.
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Resources:
This post is only a tiny introduction to the world of severe ME. If you are a patient please be careful with how many resources you read each day as this can cause cognitive crashing. If you are a caregiver be prepared to dive into a massive world of knowledge that you will need to slowly master to help your loved one.
For clinical guidelines: lintr.ee/teachmetreatme2024
For a full list of resources including:
Patient Education
Community groups
Research orgs
Financial help
Mental health aid
Facebook groups
Blogs
And more go to www.meandmore.net/resources pay especially close attention to the severe ME-specific resources
More patient accounts detailing severe ME include:
@whitneydafoe @franhaddock_ @katie_andm.e
@yr_me_friend @anilaboutme @standby.m.e @judyintheskynet @rarediseasepatient @its_whitney_witch @apronon @severemecfs @bedscapepaula @aliceandthemillions @jamesstrazza @naomi.just.living.life @look.at.m.e @chloeschronicals_of_illness @saveliznervaofficial @jayletay @thephysicsgirl
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Severe ME Resources:
Medical Guidance
NICE 2020 Guidelines
Mayo Clinic 2023
Proceedings
US 2021 Clinician Coalition
Guidelines
The 25% ME Group
Facebook support group for severely affected patients & their caregivers
Workwell Foundation
CPET studies & evidence against Graded Exercise Therapy
Whitney Dafoe & Galen Warden Blogs
Very severe ME experience & wisdom
Gurney guide to patient transport
ME Action
Advocacy for social change and government research into ME
Health Rising
Latest research into ME & complex chronic illness
Stonebird.co.uk
Books providing guidance on all things severe ME
Bateman Horne Center
Crash survival guide
Communication cards
Treatment guide for physicians
Severe chronic illness support group
ME International
Text, voice & video support groups
Door warning poster for severe ME
Advocacy for ICC Diagnostic Criteria Research
How to Get On
Sleepy Girls Guide to Disability
SSDI & SSI Help for Americans w ME/CFS
The BedBound Activities Masterlist
By Sarah Stanton
ME Association
Look for your local branch.
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Its Severe ME Awareness Month. But every month is severe ME awareness for me. So after 4 years of this post is my advice to those new to Myalgic Encephalomyelitis MECFS or to being severe.
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And since I couldn't include anywhere near everything I would like...
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Speed run advice:
-Use mobility aids liberally! Sitdown when you can
-Don't waste all your energy on the toilet. Use a commode, urinal, or bedpans if almost fully bedbound.
-The freezer is your friend for meal prep. Batch cooking and freezing is ideal for dietary restrictions & efficiency.
-Keep as much storage around your bed as possible. Carts, bookshelves, over bed tables, if you can keep it within reach: do.
-Invest in sensory control including: Blackout curtains (you can get ones that are also noise dampening), manta sleep mask, good noise canceling headphones heat pump AC/heating if possible
-Use an air purifier if you have any concerns about mold or allergens
-Take covid and flu very seriously. Wear n95 or better masks and require it of as many interactions as possible.
-Use a checklist app, I really like Finch.
-Use a symptom tracker and pacing app, I really like Visible (pro or free versions are both great).
-Take notes before any doctor's appointments. If at all possible never take doctors appointments alone, bring an advocate.
-Try antihistamines / low histamine diet in case of MCAS as testing is hit and miss.
-Run your own NASA lean test to see if you have POTS (if hr has sustained raise of 30bpm on standing you do).
-Get a doctor who will try things and prescribe off-label. If you don't like your current GP keep looking until you find one you do.
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Still looking for more guidance? I've got a whole blog of it. I recommend the severe ME and comorbidities highlights / categories to start. I also cannot recommend highly enough @bateman_horne_center and The 25% ME Group.
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Want to directly help people with ME and severe ME? Follow @mutualaidforme to give directly or help share the needs of people with Myalgic E / Long Covid.
