How many patients have been told it is all in their head and sent home with an antidepressant? The biopsychosocial model gave a generation of clinicians permission to stop looking, and while we have come a long way since the 1980s, that view is still baked into guidelines, textbooks, and insurance policy. Defeat it and almost everything else on this list gets easier.
- Document and rebut biopsychosocial claims in the literature.
- Combat media references that psychologize the disease.
- Publicize the biomedical evidence base for a lay audience.
- #MEActionCampaign Runs public campaigns challenging the "all in your head" narrative.
- David TullerJournalist Trial By Error investigations exposing the flawed methodology behind psychological trials.
- Brian HughesPsychologist Books and blogging that critique the science underpinning the BPS model.
This is the rare problem where doing nothing is safer than what is prescribed. Graded exercise is still handed out despite years of reported harm, and for people with post-exertional malaise, pushing through can cost function that never returns. Getting it out of protocols and clinics is unfinished work.
- Compile the patient-reported harm data into a citable brief guideline bodies can act on.
- Track which national guidelines and clinics still recommend GET and challenge them one by one.
- Publish safe pacing and activity-management alternatives clinicians can adopt in its place.
- Tom KindlonAdvocate Long-running analysis of how harms are under-recorded in exercise trials. [link to verify]
The primary care provider is usually the first stop, and too often gives little useful help. Most doctors were taught almost nothing about post-viral illness, so they improvise, from unhelpful to actively harmful.
- Get accredited ME and Long COVID modules into medical-school and continuing-education curricula.
- Produce a one-page clinical primer a busy GP can absorb in five minutes.
- Recruit respected clinician "champions" to teach their own peers from the inside.
- Doctors with ME / Nina MuirheadPerson + org Produces CPD-accredited medical education modules teaching clinicians about ME.
- Physios for MEOrganization Trains physiotherapists in safe, PEM-aware practice.
- ME Medical Education Campaign UKCampaign Lobbies to embed ME teaching in the UK medical-school curriculum. [link to verify]
Awareness sits upstream of almost everything: funding, volunteers, political will, a friend who believes you. Millions are affected, yet the disease barely registers in public life, and that silence is expensive.
- Recruit prominent public figures to go public with their condition; one visible disclosure can do more in a week than years of campaigning.
- Pitch mainstream media outlets on accurate, non-trivializing coverage.
- #MEActionCampaign MillionsMissing protests and media campaigns to raise public awareness.
- Solve M.E.Organization US advocacy, research funding, and national awareness drives.
- George MonbiotJournalist Guardian columns that lift the disease's public profile.
Call it "chronic fatigue syndrome" and people picture being a bit tired. Call it "myalgic encephalomyelitis" and they cannot pronounce it, spell it, or agree it is accurate. The disease is stuck between a name that trivializes it and one that confuses everyone, with no usable replacement.
- Run a structured naming consultation across patient orgs to converge on a single replacement, then bring that one agreed term to the ICD and SNOMED bodies instead of competing suggestions.
- Commission opinion research on how candidate names land with clinicians and the public.
On this scale, "mild" can mean you can no longer work, socialize, or reliably leave the house. When the gentlest label already describes serious disability, it tells assessors, clinicians, and family that things are less bad than they are.
- Design a plain-language severity scale anchored to concrete function (hours upright, care needs), and pilot it in a clinic or registry to show it beats the current labels.
Search the illness and you get a woman resting her head on her hand, looking sleepy. That single stock photo teaches everyone who sees it that this is ordinary tiredness, not a life often spent in a darkened room.
- Build a free, accurate photo and illustration library for journalists and organizations.
- Publish image guidance and lobby the major stock agencies to retag or replace the trope.
When a national body (NICE, CDC, IQWiG, NHMRC) opens a guideline for comment, someone has to be in the room. Too often no one coordinated is, and the committees that get seated can be stacked with conflicted members. These processes decide care for millions and run largely unwatched.
- Maintain a shared calendar of open guideline and health-technology-assessment consultations worldwide.
- Keep a standing panel of patients and experts ready to file coordinated responses.
- Publish a template evidence pack contributors can adapt for each consultation.
- Forward-ME Coalition of UK ME charities that coordinates joint responses to NICE and other consultations.
- Science for ME Researcher-and-patient forum that drafts and coordinates expert submissions to guideline processes.
Winning a good guideline is only half the battle. The 2021 NICE guideline exists on paper, but implementation lags and there is steady pressure to reverse it. Defending a win takes as much work as securing one.
- Audit how well the 2021 NICE guideline is actually implemented across trusts and publish the gaps.
- Prepare rapid-response briefs ready to counter rollback attempts the moment they surface.
- #MEAction Campaigns to defend and drive implementation of the 2021 NICE guideline.
- ME Association Tracks how the NICE guideline is implemented across the NHS.
Even patients who know exactly what they have often cannot find a doctor who does. The specialist workforce is tiny, so waitlists stretch for years and whole regions have no one.
- Fund fellowships and mentorships to train a new generation of specialists.
- Build tele-consult networks so the few existing experts can reach underserved regions.
- Doctors with ME Educates and organizes clinicians to grow a competent workforce.
Patients trade doctor names in forum threads and DMs because no trustworthy, maintained directory exists. Finding safe care should not depend on luck and word of mouth.
- Build a maintained, patient-vetted specialist directory, partnering with existing patient orgs to crowdsource and verify entries country by country.
- MEpedia Maintains a community clinician list patients use to find ME-literate doctors; patients also crowdsource their own doctor spreadsheets.
The sickest patients cannot get to a clinic, yet phlebotomy, dental, and imaging are almost never brought home. Care is built for people well enough to travel, excluding exactly those who need it most.
- Organize mobile phlebotomy, imaging, and dental services that come to the home, and publish a template home-visit care pathway other providers can adopt.
A hospital stay can make a severe patient permanently worse: bright lights, noise, no understanding of PEM, mishandled feeding. There is no standard protocol staff can follow to avoid harm.
- Draft a hospital-passport and accommodation protocol covering light, sound, PEM, and feeding, then pilot it with a sympathetic hospital and publish the outcome as a template.
A newly diagnosed patient faces a wall of scattered, contradictory advice at the exact moment good pacing decisions matter most. There is no trusted starting guide for the first weeks and months.
- Produce a concise, vetted "just diagnosed" starter guide centered on early pacing, translate and localize it, and get clinicians to hand it out at the point of diagnosis.
Almost every problem on this map gets easier the day there is a test. Yet there is no coordinated, funded push to develop and validate one, only scattered candidates that never cross the finish line.
- Launch a coordinated, funded biomarker-validation consortium that shares samples and protocols.
- Offer a prize or grand challenge to pull diagnostics teams into the field.
- Open Medicine Foundation Funds biomarker and diagnostic research through its collaborative research centers.
Post-exertional malaise is the core feature of the disease, but the usual way to provoke and measure it can seriously harm patients. Trials and clinics need a safe, standard measure they lack.
- Develop and validate a non-provocative PEM measure using wearables and structured symptom diaries.
- Agree a common PEM outcome instrument that trials across the field can standardize on.
- Workwell Foundation Pioneered 2-day CPET testing to objectively document post-exertional malaise.
Several competing checklists decide who counts as a patient (Fukuda, the Canadian and International Consensus Criteria, NICE's own), and they select different, only partly overlapping groups. A study built on one may be studying a different population than a study built on another, so results often cannot be compared or pooled, trials lump unlike patients together, and there is no agreed way to split the disease into subtypes.
- Convene a cross-group effort to harmonize case definitions or publish a crosswalk between them.
- Fund data-driven subtyping using existing cohorts to find groups that respond differently.
- Leonard Jason Long-running DePaul research on ME/CFS case definitions and the harm of conflating incompatible criteria.
Every team rebuilds from scratch because there is no shared backbone: no standing cohorts, registries, biobanks, or tissue and autopsy programs. Shared infrastructure would multiply a small field's output.
- Stand up shared cohorts, registries, and biobanks with open access terms.
- Create a tissue and autopsy program with clear, dignified donation pathways.
- DecodeME Built a large patient cohort and DNA study, a model for shared infrastructure.
Unblinded trials with subjective outcomes, poor harms recording, and appraisal tools (GRADE, risk-of-bias) that mishandle them have distorted the evidence base. Better methods come first.
- Publish field-specific trial-design standards: blinding where possible, objective outcomes, rigorous harms recording.
- Press GRADE and risk-of-bias bodies to fix how they score unblinded, subjective-outcome trials.
- Brian Hughes Methodological critique of trial design and appraisal in the field.
- Science for ME Community peer-review pulling apart trial methods and appraisal tools.
It took a 2016 tribunal to pry the PACE trial data loose, and when reanalysis requires a legal fight, bad conclusions stand for years. The same pattern holds more broadly: hard-won datasets and samples sit locked in individual labs, so patients are asked to give again and again and reuse never happens. Open data and sample sharing should be the default, not a prize won by lawsuit.
- Make open data and sample sharing a condition of funding and publication.
- Build a shared repository with clear governance so reuse is easy and credited.
- David Tuller Trial By Error reporting pressing for data release and reanalysis.
- Brian Hughes Methodological critique of trial data and its reporting.
There is no agreed charter setting PEM-inclusive criteria, genuine patient involvement, and no deficit framing as baseline expectations. A shared standard would keep new research from repeating old harms.
- Draft a shared ethics charter (PEM-inclusive criteria, genuine patient involvement, no deficit framing) and get funders and journals to require adherence as a condition of support.
Priorities get set without patients, researchers rarely have direct contact, and few registers match willing patient representatives to the teams who need them. Involvement is treated as a formality, not a resource.
- Build a register matching willing patient representatives to the research teams that need them.
- Fund paid, structured patient co-design roles on studies rather than token consultation.
- James Lind Alliance ME PSP Ran a priority-setting partnership to define patient research priorities.
A small field cannot afford to waste effort, yet teams work in silos and repeat each other without knowing it. There is no coordinating layer to align a shared agenda.
- Publish a shared research roadmap and an open project registry so teams can see who is doing what.
- Host regular cross-lab coordination meetings to align priorities and avoid duplication.
The pipeline is thin: little funding, little prestige, and few mentors mean few new scientists choose this disease. Growing the next generation of researchers is its own distinct problem.
- Fund PhD studentships and early-career grants earmarked for the field.
- Run summer schools and mentorship to draw scientists in from adjacent fields.
- ME Research UK Funds biomedical researchers and early-career grants to grow the field.
- Open Medicine Foundation Funds and coordinates research groups internationally.
Almost every trial that happens tests an already-approved drug, because repurposing is cheap, fast, and safe-profile known, which quietly caps the field at incremental relief rather than cures. The candidates most likely to be curative, whether novel-mechanism drugs or cheap off-patent molecules like dextro-naltrexone, get almost no shots on goal: they can't be patented, or the patient market looks too small, so no company will pay to develop or trial them. Making the market legible helps, but the deeper barrier is an incentive structure that rewards patents over cures.
- Pool philanthropic and public money into a fund that trials the off-patent, generic, and orphaned novel candidates no company will sponsor.
- Partner with academic trial units that can run these studies cheaply and independently of pharma.
- Produce a market-sizing report and brief pharma business-development teams directly, so awareness is at least not the bottleneck.
- Emerge Australia Backs a screen testing roughly 1,300 off-patent drugs on ME/CFS cells to find repurposing candidates.
- Every Cure David Fajgenbaum's systematic drug-repurposing effort; has confirmed ME/CFS is included in their analysis.
- Jared Younger Developing dextro-naltrexone himself because it can't be patented and no drug company will take it on.
Trials stall because eligible, willing patients are hard to reach and enroll, especially the housebound. Better recruitment infrastructure would speed every study in the field.
- Build a standing, consented, trial-ready patient registry researchers can draw from.
- Enable remote enrollment and screening so the housebound can take part.
The most affected patients are designed out of trials: no wearable or passive data collection, no infrastructure for decentralized or N-of-1 studies. The evidence base then ignores those who need answers most.
- Fund decentralized, patient-led, and N-of-1 trial infrastructure.
- Standardize passive and wearable data collection so severe patients can be studied at home.
- Open Medicine Foundation Funds studies that deliberately include severe and very severe patients.
How often do we see an interesting result and then no follow-up? There is little incentive or funding for one team to replicate another's finding: PhDs need their own ideas to test, and there is no credit or career advancement for confirming someone else's.
- Ring-fence funding specifically for replication of key findings.
- Create a "replication track" that carries real publication and career credit.
Most breakthrough fields have a handful of major donors who de-risk the early work. This one does not, so ambitious projects never get off the ground.
- Build a major-donor prospect list and professional case-for-support, and cultivate affected high-net-worth individuals and family foundations directly.
- Open Medicine Foundation Raises and directs philanthropic funding into ME research.
Measured per patient or per year of life lost, public research funding for this disease is a fraction of comparable conditions. Closing that gap is a sustained political and budget fight.
- Commission burden-of-disease and cost-of-inaction economics to make the funding case.
- Run coordinated appropriations campaigns targeting health agencies year after year.
- Solve M.E. Lobbies US agencies for research appropriations.
There are no pooled funds, prizes, bounties, or microgrants to move small amounts of money quickly to promising people and ideas. The tooling that lets a community self-fund simply is not built.
- Set up a pooled fund with a lightweight microgrant and bounty process.
- Launch prizes tied to specific milestones (a validated biomarker, a safe PEM measure).
Other patient movements retain professional lobbyists who work legislatures full time. This field relies on exhausted volunteers, and it shows in the results.
- Retain professional lobbyists funded by pooled community money.
- Train a small cohort of patient-advocates in legislative process and access.
- Solve M.E. Runs sustained US congressional advocacy and appropriations work.
The organizations that do exist are often under-resourced and run by sick volunteers, limiting how much they can raise and deploy. Building real operational capacity is itself a problem to own.
- Provide shared back-office services (accounting, grants, communications) across small orgs.
- Fund paid operational staff so orgs do not depend solely on sick volunteers.
Pressure comes in bursts around awareness days and then fades. Lasting change needs steady, organized pressure that does not depend on a few people's remaining energy.
- Build a distributed, rota-based advocacy structure so no single person burns out.
- Fund at least one paid organizer to hold momentum between awareness days.
- #MEAction Sustained grassroots campaigning that runs beyond awareness days.
- Solve M.E. Ongoing US policy and advocacy work.
The people with the most reason to protest are often the least able to show up. Advocacy tactics built for healthy bodies exclude the movement's own base, so new low-energy forms of action are needed.
- Design remote and asynchronous actions (digital campaigns, proxy protests, shoe and bed demonstrations).
- Recruit healthy allies to carry the physical presence patients cannot.
- #MEAction Organizes MillionsMissing protests, including low-energy and virtual actions.
Government assessments measure quantity of output, not cognitive quality, and private insurers deny claims via "no objective proof" exclusions and social-media surveillance. The system is built to say no to this disease.
- Produce assessment-ready evidence packs tailored to each benefits and insurance system.
- Train welfare-rights advisers and publish an appeals playbook.
- Chronic Illness Inclusion Research and advocacy on disability benefits for energy-limiting conditions.
Severely ill adults can be sectioned on a psychiatric basis, and families have no prepared evidence pack to challenge it in the moment. A ready legal and medical defense kit could prevent real harm.
- Assemble a ready legal-and-medical defense kit families can deploy immediately.
- Maintain a roster of expert clinicians willing to contest a sectioning at short notice.
- 25% ME Group With The Grace Charity for M.E., runs a project to help prevent unnecessary forced psychiatric sectioning of severely ill patients.
Whether ME or Long COVID counts as a protected disability depends on where you live and who reviews your case. Inconsistent recognition means inconsistent access to accommodations and protection.
- Pursue test cases and agency guidance clarifying ME and Long COVID as protected disabilities.
- Publish model accommodation letters and the precedents that back them.
Not every gatekeeper is external. Some established organizations focus more on survival and keeping members calm than on pushing for evidence-based change. Reforming or routing around them is real work.
- Publish transparent scorecards of org positions, spending, and outcomes.
- Build new, evidence-first advocacy vehicles where reform from within stalls.
There is essentially no assisted, low-income, co-living, or community housing built for this disease: dark, quiet, low-exertion, with care on hand. Patients improvise in housing that works against them.
- Develop pilot ME-appropriate housing (dark, quiet, low-exertion, with care on hand) and publish design standards developers and housing associations can adopt.
There is nowhere to go for a supervised period of deep rest during a crash, and no respite to relieve exhausted caregivers. The care model has a gaping hole where these facilities should be.
- Pilot an aggressive-rest respite facility and document a replicable model.
- Fund respite placements so exhausted caregivers get real relief.
Partners and family become full-time carers with no training, pay, or respite, and relationships buckle under the load. Supporting caregivers is part of supporting patients.
- Provide caregiver training, peer support, and paid respite.
- Advocate for carer's allowances that actually recognize this disease.
General crisis lines rarely understand the disease, and despair is common. A crisis and suicide-prevention resource built for this community, by people who get it, does not exist.
- Stand up a peer-run, disease-literate crisis and suicide-prevention line.
- Train existing crisis services on the realities of ME and Long COVID.
For the most severe, unrelenting cases, the absence of legal, humane options is its own source of anguish. It is a hard, contested issue that the community nonetheless has to be able to discuss.
- Create a safe, moderated space and an ethical framework for the conversation.
- Ensure the most severe first have access to maximal palliative and symptom relief.
The disease quietly removes people from work, friendships, and public life, and the loneliness compounds the illness. Meeting people and dating assume an energy and mobility budget patients do not have, so connection fades along with everything else. Low-energy ways to stay connected, including to date, are real, needed infrastructure.
- Build low-energy, accessible social and dating spaces (asynchronous, bed-friendly, no pressure to show up).
- Fund befriending and peer-connection programs aimed at the housebound.
Patients help each other constantly but informally. There are almost no durable structures (mutual-aid funds, unions, co-ops) to pool money and bargaining power at scale.
- Set up patient mutual-aid funds and a disabled-patients' union or cooperative.
- Provide legal templates to formalize the informal networks that already exist.
- Long Hauler Mutual Aid Initiative Patient-run mutual-aid network and clearinghouse on r/covidlonghaulers that matches community members in need with those who can help.
Adjusting to a life-altering illness is real psychological work, distinct from the discredited idea that the disease is psychological. Few therapists are trained to help without stigma.
- Train therapists in acquired-disability adjustment, explicitly not disease-as-psychological.
- Build a vetted directory of safe, disease-literate therapists.
The very people these services target often cannot use them: too much reading, light, motion, or clicking. Patient-facing tools need to be designed for fatigued, sensitive users first.
- Publish accessibility standards for cognitive and sensory impairment.
- Offer free accessibility audits for patient-facing tools and surveys.
What is worth trying, what is worth testing, and what is a waste of scarce energy and money? There is no maintained, trustworthy guide, so every patient reinvents the research.
- Maintain a consolidated, evidence-graded treatment and testing guide, kept current by a small editorial team with clear, transparent sourcing.
- ME Association Publishes clinical and patient guides on management and testing.
Thousands of recovery and treatment stories are scattered across forums in a form no one can learn from systematically. Structuring and validating that data could surface real signal.
- Build a structured recovery and treatment data collection with common, comparable fields, then apply careful analysis to surface signal without overclaiming from anecdote.
- You + ME Registry (Solve M.E.) Collects structured patient symptom and history data through a standing registry.
- Health Rising Aggregates and writes up patient recovery and treatment stories.
Desperation is a market, and it is being worked hard. Expensive, unproven cures drain patients financially and emotionally, and there is little organized pushback.
- Publish a plain-language guide to spotting snake oil and its red flags.
- Report deceptive marketing to advertising and consumer-protection regulators.
Slick, well-funded programs dominate search results and feeds, often recycling the same psychological framing patients are trying to escape. Good information is being out-marketed.
- Fund SEO and content so accurate information out-ranks the programs in search and feeds.
- Document the harms and misleading claims these programs make.
- David Tuller Reporting on Lightning Process and brain-retraining marketing claims.
Disbelief from the people closest to you is one of the heaviest parts of the disease. Clear, shareable explanations that actually land with loved ones are in short supply.
- Produce shareable explainers (short videos and one-pagers) that patients can send skeptical family and friends instead of arguing.
The most affected patients are too ill to advocate, attend, or even be photographed, so they vanish from the public picture of the disease. Their invisibility shapes how seriously everyone else takes it.
- Fund low-burden ways for the very severe to document and share their reality.
- Require research and media to deliberately include severe and very severe patients.
- #MEAction Campaigns to make severe and very severe patients visible.
Sick children face disbelief, missed diagnoses, and even safeguarding accusations against their parents, while pediatric care and research lag far behind even the thin adult provision. EHCPs, tuition refunds, flexible deadlines, and virtual schooling are patchy or absent, so illness quietly ends educations built for full-time attendance.
- Build safeguarding-defense packs for parents wrongly accused of causing their child's illness.
- Establish education pathways (EHCPs, virtual schooling, flexible deadlines) as standard, not favors.
- Fund dedicated pediatric care and research to close the gap with adult provision.
- TYMES Trust Supports children and young people with ME and their families.
- Chronic Illness Inclusion Research and advocacy on inclusion for people with energy-limiting conditions.
A majority-women disease has almost no guidance on how it interacts with cycles, pregnancy, and menopause. Patients navigate major hormonal transitions with no evidence to guide them.
- Fund studies on how the disease interacts with cycles, pregnancy, and menopause.
- Produce interim clinical guidance for these transitions while the evidence builds.
The stereotype of the disease as a white, middle-class condition is a research and access failure, not a fact. Minorities are underdiagnosed, understudied, and underserved.
- Fund outreach and research in underrepresented communities.
- Recruit diverse cohorts and partner with community health organizations.
People with vaccine-associated post-viral illness sit in a politically radioactive gap, wanted by neither side of the vaccine debate. The taboo leaves a real patient group without support or study.
- Create a non-political support and research pathway for post-vaccine illness.
- Study its overlap with post-viral illness openly, without ideological framing.
- React19 Patient-led nonprofit supporting and researching COVID vaccine-injured patients, an overlap group with Long COVID and ME.
Most resources, research, and advocacy are concentrated in a few wealthy countries. Patients elsewhere lack local diagnosis, guidance, and organizations in their own language and system.
- Translate and localize core resources into more languages and health systems.
- Seed and support patient organizations in underserved countries.
- Emerge Australia Builds country-specific ME infrastructure in Australia: registry, telehealth, and guidance.
