Living with Severe ME… Adaptions, Symptom Management and Treatment
Context
In a follow-up to "What is Severe ME?", this post is designed to help severe patients find adaptations, medications and treatments that might help them as well as help friends and family understand why we live the way we do.
Despite the fact that there are no FDA-approved treatments for ME, there are many things severe ME patients need in order to improve their quality of life and treat the many symptoms and comorbidities that come with this disease.
To learn more about the symptoms, struggles, and definition of severe ME read the previous post.
-------
Adaptive tools
In order to improve quality of life, there are a number of mobility, sensory, and bodily adaptations someone may seek out. Here are a few grouped by symptom:**
Energy Saving:
-Electric wheelchair
-Commode
-Pre-made meals
-Easy pot or air fryer
-Wheeled carts or shelving by bed for medications and necessary supplies
-Lap desk / overbed table
Orthostatic Intolerance:
-Manual wheelchair
-Tilt in space wheelchair
-Port or PICC for saline
-Shower chair or bath lift
-Tilt in space commode
-Hospital bed
Mobility:
-Manual Wheelchair
-Walker or Cane
-Bars in the bathroom or by bed
-Ceiling or mobile hoist
-Bath trolley or transport trolley
-Overbed pole
------
Sensory control:
-Headphones and earbuds
-Silicon or foam plugs
-Adaptive earplugs (Loop)
-Eye masks
-Migraine masks (Manta)
-Weighted blanket
-Bamboo, silk or cotton sheets
-Air purifiers
Pain relief / Temperature control:
-TENS unit
-Heat and cold packs
-Hot water bottles
-Heating pads / Heated blankets
-Migraine cold pack head covers or eye masks
-Extra-large cooling pads
-Bed wedges
-Specialty pillows
-Air conditioning
-Humidifiers
Hygiene:
-Bedpans
-Bed pads
-Mattress protectors
-Dry shampoo
-Nilaqua bedbath products
-Detangling spray
-Deodorant
-Inflatable hair washbasin
-Protective hairstyles
-Cutting hair short or shaving head
-----
Symptom management & Treatment
The primary method of symptom management and treatment of severe ME is pacing which is a complex topic in itself. Patients unfamiliar with pacing should start by cutting activity at least in half and should see previous guides on this page and material by Workwell Foundation, Emerge, ME Association, and ME Action. #StopRestPace.
In addition to pacing and adaptive tools symptom management of comorbidities is extremely important for severe patients. Additional diagnoses may be helpful in pursuing this treatment. In many cases, a referral to palliative care may be appropriate.
Here are some areas to focus on:
-------
Pain management:
Potential Diagnoses:
-Fibromyalgia
-TMJ
-CRPS
-Migraine
-Cluster headache
-Trigeminal neuralgia
-Neuropathic pain
-Small fiber neuropathy
Medications:
-Tylenol / NSAIDs
-CBD / MMJ
-PEA
-Muscle relaxants* (Baclofen)
-SNRIs*
-Tricyclic antidepressants*
-Nerve pain medications* (Lyrica, gabapentin)
-Migraine preventatives
-Triptans
-Opioids**
Therapies:
-TENS
-Massage Therapy
-Accupuncture / accupressure
-High flow oxygen for migraine and cluster headache
****Warning: Physical therapy is rarely ever appropriate for severe ME patients as pain management. Unguided exercise is never an appropriate recommendation.*****
------
Dysautonomia:
Potential diagnoses:
-POTS
-Orthostatic Intolerance
-Orthostatic Hypo/Hypertension
Medications:
-Salt Pills
-Beta-Blockers
-Fludrocortisone
-Midodrine
Treatments:
-Saline infusions / Port or PICC placement
-Raising bed head at night
-Increase fluid/electrolyte intake orally
-Adaptive measures (see prev slides)
-------
Immune and Gastrointestinal:
Potential Diagnoses:
-Mast Cell Activation Syndrome (MCAS)
-Multiple Chemical Sensitivity
-Allergy to ______
-Gastroparesis
Medications:
-First gen antihistamines (benadryl)
-Ketotifen
-Epipens (for anaphalaxis)
-Motility Stimulants
-Antiemics (anti-nausea)
Treatments:
-Low histamine diet
-Elimination diet
-----
Mental health:
Potential diagnoses:
-Depression
-Reactionary Depression
-Anxiety
-PTSD / CPTSD
Medications:
-SSRI antidepressants*
-SNRI antidepressants*
-Tricyclic antidepressants*
-Seroquel*
-CBD
-Benzodiazepines**
Therapies:
-Acceptance Commitment Therapy
-Non-curative Cognitive Behavioral Therapy
-Art Therapy
-Meditation
****Warning: exercise extreme caution in who you seek psychiatric care from. It is best to ensure your practitioner is fully informed on the physical nature of the disease before booking any appointments.****
**danger of addiction
*be aware of physical withdrawal symptoms during tapers
-------
Experimental Treatments
There are no FDA-approved treatments for ME. The previous drugs are approved to treat common comorbidities. However, some treatments that are often used in severe patients despite limited evidence currently available* include…
Low Dose Naltrexone (LDN)
Low Dose Abilify (LDA)
Intravenous Immunoglobulin (IVIG)
Antivirals
*These treatments currently have promising preliminary results but have small sample sizes and non-placebo controlled trials
Additionally, there are many supplements and vitamins both intravenous and oral that are recommended by functional medicine doctors. While these treatments are unproven some patients may choose to pursue them anyway given the lack of FDA-approved treatments and abysmal quality of life.
-------
There are no FDA-approved treatments for Myalgic Encephalomyelitis or MECFS. However, this does not mean access to resources does not affect the outcome of ME/CFS patients. Especially in cases of severe ME.
This post focuses on adaptive tools and disability accommodations as well as symptom management, palliative care and comorbidity treatment. There is also a brief overview of some experimental treatments.
In addition to the extensive list, this post presents medication, treatments, therapy and adaptations used to help people with this chronic illness manage chronic pain, #chronicFatigue and PEM/PENE there are so many more ways that having access to resources can improve health. These include …
-Ability to consult with private healthcare practitioners who are more willing to use telehealth and experimental treatments
-Ability to receive help with activities of daily living from friends and family who do not need extensive instruction. This can include but is not limited to..
---meals brought to bed
---bedpans or commode changed regularly
---social support and emotional regulation
---nursing support
---medication management, picking up prescriptions
---patient advocacy in appointments
---helping to schedule appointments
---cleaning and household help
-Lower stress around housing, food, hygiene, and access to treatment
-Protection from abuse by doctors, psychiatric facilities, careers, and police
-Ability to live in safe environments aka
---hygenic
---mold-free
---accessible
---low sensory
---consistent and stable location
I have been incredibly privileged to have access to all possible assistance and treatments. Does this mean I am not chronically ill? No. Does it make recovery guaranteed or even likely? No. But it greatly improves my quality of life. It gives me assurance that my suffering is not because of a lack of access but because of a lack of human knowledge. This puts me in an extremely lucky minority.
People with ME, particularly severe ME are so often denied the basic accommodation of help and safety. I hope this post shows how even while FDA treatments remain non-existent, access to support and accommodations are essential.
