ME Has No Treatments Or Cures and There Is Lots Doctors Can Do To Help
Important: this post provides medical information on possible treatments to ask your doctor about NOT medical advice.
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What Does It Mean That ME Is Incurable & Untreatable?
Incurable - Only 5% of patients with ME have an improving trajectory. There is no treatment or medication that can cure someone of ME. Pacing is only effective at managing symptoms and preventing progression of the disease.
Untreatable - There are no medications that reliably improve the core functional limitation of ME: extremely lowered physical and cognitive energy and post exertional neuroimmune exhaustion in response to using more than this highly limited energy budget.
Just because an illness is untreatable and incurable does not mean there is no medical care available. For example: someone with an incurable and untreatable brain tumor may still receive palliative medications to help with muscle spasms, mobility aids to help with paralysis and so on.
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What Can Doctors Do To Help?
For starters, doctors should be providing emotional validation and reassurance to patients regardless of what they can do for them. But the concrete actions that doctors can take are also massive. The reason these actions are not curative or treatments for ME is because they are:
1. Diagnosing and treating something else that co-occurs with ME
☆Testing For Autoimmune Diseases, Infectious Diseases, Mold, SIBO & Gastroparesis
☆Treating Mast Cell Activation Syndrome
☆Treating Comorbid Mental Health Conditions
2. Palliative Care
☆Treating Migraine, Pain, Sleep & Nausea
☆Treating Acute Infections & Conditions
☆Treating Orthostatic Intolerance
☆Getting Disability Support & Mobility Aids
3. Not Supported By Evidence
☆Supervising Experimental Treatments
This post is in no way exhaustive of every helpful intervention a healthcare provider has access to and even more possibilities may exist depending on a person’s individual condition.
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Testing & Treating Commorbidities
Autoimmune Disease: Fibromyalgia, Lupus, Sjogrens / Vasculitis, Rheumatoid Arthritis, Primary Immune Deficiencies, Mast Cell & Allergic Diseases, Hashimotos (and endocrine testing generally)
Dysautonomia: Postural orthostatic tachycardia, orthostatic hypotension, raynauds
Infectious Diseases: Herpes Viruses, H.Pylori, Lyme Disease, EBV reactivation or CAEBV, prescription of Valtrex, doxycycline, or other antivirals & antibiotics
Mold: Mycotoxin testing, environment testing, prescription of antifungals
SIBO & Gastroparesis: Breath testing or endoscopic sampling, gastric emptying study, prescription of antibiotics or motility-enhancing drugs.
Structural: Chiari malformation, Craniocervical instability Tethered chord, Hypermobility (EDS & HSD), Mitral valve defect, TMJ Disorder
Neurological: Hyper or hypokalemic periodic paralysis, MRI screening for tumors, MS screening (can be comorbid!)
Genetic: Mitochondrial disease (muscle biopsy also recommended if suspected), EDS & rare genetic conditions
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Treating Migraine, Pain & Nausea
Migraine: Abortative drugs such as rizatriptan to stop migraines. Preventative drugs such as beta blockers, Trazadone, CRGP inhibitors, pills or monthly injections
Pain Meds: SNRI's, nerve pain medications such as gabapentin and Lyrica, CBD / THC, opiods, NSAIDs
Sleep: Melatonin, Antidepressants, sedating pain medications, GABA agents or benzos, CBD / THC
Pain Treatments: TENS unit, Massage, Heat / Ice
Nausea: Odensatron, prochlorperazine, metoclopramide
Managing Hydration & Nutrition
Hydration: Salt pills, adaptive drinking solutions like hydrant bottles or drinking bladders, saline through feeding tubes, IV saline, hydration infusions through port or PICC lines.
Nutrition: Dietician advice accessible high nutrition low effort meals, testing for nutritional deficiencies, nutritional drinks, elemental formulas, feeding tubes & feeding tube formulas.
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Treating Orthostatic Intollerance
Testing for correct diagnosis of orthostatic intolerance with tilt table or NASA lean test.
Guidance on hydration & salt intake, compression stockings, heat avoidance.
Medications for tachycardia & blood pressure management including: Ivabradine, Beta Blockers, Fludrocortisone, Midodrine, Clonidine
Treating Acute Infection & Illness
DO NOT dismiss patients symptoms as simply part of ME if the patient feels they are atypical.
REMEMBER to keep in mind medication sensitivity & interactions when prescribing.
Provide at home pathology requests for blood testing including for blood cultures, inflammatory markers, and electrolyte imbalance
Prescribe antibiotics for urinary tract infections or central line infections, recognize early signs of sepsis and arrange a direct admission to hospital if necessary
Monitor chronic inflammatory conditions and manage minor skin infections, thrush, cold sores etc.
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Treating Mast Cell Activation Syndrome
Testing for mast cell mediators with blood and urine testing.
Dietary intervention: low histamine diet as able to accommodate within living arrangements.
Treatment of histamine intolerance with DAO & antihistamines
H1 blockers: Zyrtec, Xyzal, Claritin, Allegra, Benadryl, Hydroxyzine
H2 blockers: famotidine, cimetidine, nizatidine, rizatidine
Treatment of mast cell activation with mast cell stabilizers: quercetin, ketotifen, NAC, TQ
Treatment of asthma: Singulair, steroid inhalers
Prescription of emergency medications: Benadryl, prednisone, epipens
Treatment with biologic injections: Xolair 300mg monthly
Treatment of other autoimmune disease with biologics such as Humira may also assist
In some situations, long term prednisone or Benadryl therapy may be necessary to control symptoms.
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Treating Commorbid Mental Health Conditions
Illness Grief: Support groups (virtual), peer support from other chronically ill patients, informing family how they can help.
PTSD and CPTSD: Trauma-informed therapy. Nervous system regulation. EMDR therapy. Stella Ganglion Block.
Depression: Regular (weekly or as tolerated) phone therapy non-curative ACT or CBT. Antidepressant medication.
Anxiety: Psychotherapy. Regulatory exercises/breathing exercises. SSRI or SNRIs. Benzodiazapine medication.* Anti-anxiety supplements like valerian root & and passionflower extract.
ADHD: Diagnosis and management by a specialist psychologist. Option to use stimulant medications.**
Autism: Diagnosis and management by a specialist psychologist. Stim toys & accommodations. Autistic support groups. Communication aides.
OCD: Diagnosis & therapy by a trained professional. Harm reduction focusing on most physically dangerous (exertive) compulsions first.
Anorexia & EDs: Diagnosis and management under a psychiatrist and dietician. Provision of tube feeding as necessary. Extreme caution used around exercise compulsions. Providers should be skilled at dealing with both disordered eating and necessary dietary restrictions and modifications being used together.
Acute Crises: Inpatient treatment must be significantly modified to ensure patient safety including access to food and toileting aid, access to IV hydation or nutrition if used at home & exemption from mandatory activities as required for pacing. In cases where inpatient care is not possible sedation within the home may suffice. For non-mobile patients, safety may be possible simply by limiting access to materials and drugs.
*Can be addicting, may have beneficial effects on sleep and sensory overload.
**Can be harmful if they do not help hyperactivity. Should not be used to increase energy.
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Getting Disability Support & Mobility Aids
Wheelchairs - Prescriptions especially for expensive tilt-in-space electric wheelchairs. Encouraging wheelchair use that will improve quality of life.
Access to patient transport - Writing letters that can be used to ensure patients can get transport home from hospital if they take an ambulance. Writing letters confirming a patient's flatbound status.
Disability pensions - Writing supportive and detailed letters about a patient's diagnosis and limitations for disability applications.
School & workplace accommodations - Suggesting or supporting accommodations like flexible deadlines, excusal from physically exertive activities, access to "rest/nap rooms" (ie. Rooms where you can lie down during the school or work day), access to work from home or remote classes etc.
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Supervising Experimental Treatments
Low Dose Naltrexone - In a non-placebo controlled retrospective study of 418 ME/CFS patients, 73% reported a positive improvement in symptoms. (Olli Polo et all) A widely tested safe medication.
High Dose Benfotiamine (B1) - In a poll on health rising 60% of patients with ME/CFS/Fibromyalgia reported a positive improvement in symptoms. A widely tested safe supplement.
IVIG - A 2021 evidence review by Helen Brownlie and Nigel Speight concluded that despite currently mixed evidence "pending further research, clinicians would be justified in offering a course of IgG to selected ME/CFS patients at the more severe end of the spectrum." IVIG carries significant risk and infusions must be done under close medical supervision.
Mestinon - A number of promising studies including Open Medicine Foundations LIFT trial are being done on this drug which works on the peripheral nervous system and may improve excercise capacity. Comes with an array of side effects and overdose can be deadly.
IV Glutathione & Vitamins - Some patients report improvement of symptoms following infusions of glutathione &/or vitamins. This carries risk of sepsis so oral forms are safer unless IV fluids are already being used.
Supplements - An 8 week randomized control trial of 73 CFS patients testing CoQ10 and NADH supplementation found positive improvements in fatigue and functioning. However, post-exertional symptoms were not required. Another popular supplement is PEA which has been found helpful in fibromyalgia. Those with muscle weakness or spasms may benefit from magnesium supplementation.
Valtrex & Infection-Based Treatments - In cases where testing reveals EBV or other herpetiform viruses, Valtrex may be a helpful treatment. In those with post-lyme ME or positive Lyme test antibiotics may be trialed.
Note that I do not endorse any experimental treatment as curative for ME and the list above includes many treatments for which evidence is only anecdotal.
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Myalgic Encephalomyelitis aka MECFS in an incurable neuroimmunological illness from which only 5% recover. But despite having no FDA-approved treatments or cures there is still plenty that doctors can do to help.
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The 2021 Clinician Coalition Treatment Guidelines
2023 Mayo Clinic Proceedings
& NICE 2021 Guidelines
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All provide a helpful framework for treating patients with MyalgicE as well as the 50% of patients with Long Covid who meet the diagnostic criteria for ME / CFS.
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It is essential that Medical School teaches doctors about this common and devastating illness which affects 1.3% of the US population, yet is undiagnosed in 90% of patients and takes on average 5 years to be diagnosed. We must Teach ME to be able to Treat ME.
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Many doctors do not even bother diagnosing ME or tell patients there is no point to the diagnosis because there is no treatment.
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However, the opportunity for symptom management and quality of life improval is high as is the importance of testing for and diagnosing comorbidities. Therefore, the benefit of diagnosing patients and accessing these interventions is high.
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This post is not medical advice, but it is a laundry list of all the things your doctor could help you with as you try to improve your quality of life.
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Every case of ME is different and many subgroups of the illness respond differently to the same potential treatments. So it is important you seek out a doctor willing to take them to get to know you and find an individualized approach to management.
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Most important is that you listen to your body and advocate for your right to healthcare.
