Tools

Personalized Fact Sheet

Answer the questions below to generate a printable fact sheet tailored to your situation. Share it with your doctor, family, or caregivers.

Select all that apply in each category. The more you select, the more targeted your fact sheet will be.

1. Who is this fact sheet for? Required

Myself A personal reference covering your diagnosis, symptoms, pacing rules, and crash management — to keep, share, or bring to appointments. My doctor / specialist Clinical overview, diagnosis criteria, what to avoid, and how to support this patient. Family / friends Plain-language explanation of ME/CFS, why it looks invisible, and how to help. My caregiver What caregivers need to know: energy envelope, crash signs, infection prevention, and avoiding harmful advice. Employer / school ADA accommodations, why fluctuating function is real, and why push-through approaches are medically contraindicated.

2. What is your baseline severity level? Required

This is your typical day-to-day function when NOT in a crash.

Mild Functioning at 50-70% of pre-illness level. Can work or study part-time with significant adaptation. Still housebound on bad days. Requires daily rest periods. Moderate Unable to maintain employment or full-time study. Housebound most days. Dependent on others for some tasks. Limited to light household activity on good days. Severe Mostly or entirely bedbound. Dependent on others for most daily activities. Severe cognitive impairment and sensory sensitivity. Limited communication capacity. Very Severe Fully bedbound and dependent on full-time care. Cannot tolerate light, sound, or visitors. May be unable to speak above a whisper or swallow normally.

3. How severe are your crashes (PEM episodes)? Optional

Crashes can be more severe than your baseline. Select the worst crashes you typically experience.

Mild crash Increased fatigue and brain fog 1-3 days. Like functioning through a bad hangover with a cold. Still managing essentials but at high cost. Moderate crash Must cancel all non-essential activity. Unable to leave home. Reading or following TV impossible. Constant flu-like pain. Lasts 3-14 days with full rest. Severe crash Bedbound, cannot tolerate any light, sound, or visitors. Cannot prepare food or reach bathroom unaided. Cognitive function nearly absent. May last weeks to months. Very severe crash Completely dependent on caregivers. May be unable to speak or swallow. Air hunger continuous. Risk of permanent baseline lowering. Tube feeding in extreme cases.

4. Which core symptoms do you experience? Optional

Post-Exertional Malaise (PEM) Crashes triggered by physical, cognitive, emotional or sensory exertion. Onset immediate to 48+ hours later. Cardinal feature required for diagnosis. Profound Fatigue Full-body exhaustion that does not improve with rest. Qualitatively different from normal tiredness. Present most days, substantially impairing. Unrefreshing Sleep Wake feeling as tired or worse than before sleeping. Sleep studies show objective abnormalities. Required for IOM 2015 diagnosis. Brain Fog / Cognitive Impairment Impaired memory, attention, processing speed, word-finding. Can make reading, conversation, or completing sentences impossible during crashes. A biological impairment, not psychological.

5. Which other symptoms do you experience? Optional

POTS / Orthostatic Intolerance Heart rate spikes on standing (30+ bpm). Dizziness, palpitations, pre-fainting, worsened brain fog upright. Affects ~30-40% of ME/CFS patients. Chronic Pain Widespread musculoskeletal pain, headaches, neuropathic pain. Central sensitisation involved. Pain management must avoid push-through approaches. Sensory Sensitivity Hypersensitivity to light, sound, touch, smell, temperature. Sensory overload is a PEM trigger. Environmental accommodations are medical necessities. Air Hunger / Breathing Difficulty Distressing inability to take a satisfying breath. Not a lung problem - caused by thoracic hypovolemia from POTS. Worsens during crashes. Affects ~42% of patients. GI / Digestive Symptoms Nausea, abdominal pain, bloating, IBS-type symptoms, food sensitivities. Can worsen during crashes and with MCAS overlap. Flu-like / Immune Symptoms Sore throats, tender lymph nodes, low-grade fever, feeling constantly "on the edge of sick." Indicates ongoing immune activation.

6. What do you think triggered your ME/CFS? Optional

ME/CFS often follows an infection or other physiological stressor. Select all that preceded your onset.

COVID-19 / Long COVID SARS-CoV-2 infection is now one of the most common ME/CFS triggers. 4.5-58% of long COVID patients meet ME/CFS criteria depending on population studied. Viral illness (flu, EBV/mono, other) Influenza, Epstein-Barr virus (infectious mononucleosis/glandular fever), and other viral infections are the most historically common ME/CFS triggers. ~72% of cases follow acute infection. Stomach virus / GI infection Gastroenteritis and GI infections can trigger ME/CFS and are associated with post-infectious IBS overlap. Gut microbiome disruption is a documented feature of ME/CFS. Tick-borne infection (Lyme, Babesia, etc.) Post-treatment Lyme Disease Syndrome (PTLDS) shares significant overlap with ME/CFS. Borrelia, Babesia, Bartonella and co-infections can trigger or mimic ME/CFS. Thorough tick-borne panel recommended. Mold / biotoxin exposure Water-damaged building exposure can trigger CIRS (Chronic Inflammatory Response Syndrome), which significantly overlaps with ME/CFS. HLA-DR genetic susceptibility increases risk. Gradual / no clear trigger Some ME/CFS cases develop gradually without an identifiable acute trigger. Cumulative stress, multiple infections over time, or unrecognised infections may be involved. Surgery / medical procedure Major surgery, anaesthesia, and medical trauma have been documented as ME/CFS triggers, particularly in genetically susceptible individuals.

7. Do you have any confirmed or suspected comorbidities? Optional

MCAS (Mast Cell Activation Syndrome) Flushing, hives, anaphylactoid reactions, GI distress, histamine intolerance. Treated with H1/H2 antihistamines and mast cell stabilizers. EDS / Joint Hypermobility (hEDS/HSD) Joint hypermobility, chronic pain, skin fragility. Strongly associated with POTS. Affects ~10-20% of ME/CFS patients. Long COVID Persistent symptoms following COVID-19. ME/CFS expertise is directly applicable. Shared biology: mitochondrial dysfunction, immune dysregulation, microclots. CIRS / Mold Illness Chronic inflammatory response to biotoxins. Requires environmental remediation. Shoemaker Protocol for diagnosis and treatment. Fibromyalgia Widespread pain, tenderness, and sleep disruption. Frequently co-occurs with ME/CFS. Central sensitisation is a shared mechanism. Lyme Disease / Post-Treatment Lyme PTLDS symptoms closely mirror ME/CFS. Ongoing controversy around persistent Lyme. Comprehensive tick-borne testing warranted if onset followed tick exposure or unexplained flu-like illness.

8. Which topics do you want included? Optional

Diagnosis criteria IOM 2015 criteria, what tests to run, why labs are typically normal, and how ME/CFS is diagnosed clinically. Pacing & energy management The energy envelope model, heart rate monitoring, activity diaries, and why graded increases are harmful. What to avoid (GET / push-through) Why Graded Exercise Therapy is contraindicated. NICE NG206 2021 guidelines. The deconditioning myth debunked. Crash management plan Step-by-step what to do when a crash starts. How to document crashes. What full rest means. How to pace recovery. Infection prevention (for household) Why any infection can cause permanent baseline lowering. Masking, handwashing, and vaccination guidance for people who live with an ME/CFS patient.

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Personalized Fact Sheet

1. Who is this fact sheet for? Required

2. What is your baseline severity level? Required

3. How severe are your crashes (PEM episodes)? Optional

4. Which core symptoms do you experience? Optional

5. Which other symptoms do you experience? Optional

6. What do you think triggered your ME/CFS? Optional

7. Do you have any confirmed or suspected comorbidities? Optional

8. Which topics do you want included? Optional

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