Thread by @tessfalor

#IIMEC15 Dr Dag Storla

Treatments in a Clinic for Severely Affected
ME/CFS Patients

Staff consists of: registered nurses, research nurse, health care providers, occupational therapist, etc

biomedical approach based on NICE guidelines

Core values: deep respect for patient and individualized care

SF36 fatigue scale and Fitbit HR, HRV, sleep, steps, etc. used for monitoring

4 step program - selected vitamins, minerals, drugs

Not formally a research program or clinical trial. It's a search for a new strategy for treatment of a serious disease

Treatment (each tried for 2 months):
1. Thiamine, ORS
2. NADH, Q10, B12
3. Low Dose Naltrexone (LDN)
4. Low Dose Aripriprazole (LDA)

Thiamin 600-1800 mg + NAC, vitamins (like B and multi), and minerals (like potassium and Mg)

ORS (Oral rehydration salt)
1 liter ORS twice weekly
consumed w/in 1 hour

Study: Meadow, USA - improved POTS and cognition

NADH and Co Q10

improves mitochondrial dysfunction

200 mg Q10, 20 mg NADH

B12 injections

Study: Regland, Sweden - improved cognition, energy, pain

10mg/2mL subcutaneously twice weekly (effect increases with higher and more frequent dosage)

Low Dose Naltrexone (LDN)

increases endorphins (painkilling and immunomodulating)

Study: Polo, Finland - improved cognition and energy, lower pain

4.5-6 mg

Can be up to 6 months to see effect, but usually see something in 2 months

Low Dose Aripiprazole (LDA) - Abilify

Study: Crosby, Stanford

Reduces brain inflammation

start with 0.25 mg, max 1.25-2.5 mg

Treated more than 100 patients, and most had positive effect

8 improved from very severe to severe or better (some even got mild)

synergy effect - more of the 4 steps the larger the improvement

3 patients didn't want treatment, so became control group (good care and maximal energy economizing improves quality of life, but not energy… twitter.com/i/web/status/1…