The UK Government’s 2026 shift toward non‑pharmacological treatments (NPTs) and expanded social prescribing is being promoted as a move toward “personalised care,” but for people with Myalgic Encephalomyelitis (M.E), this policy change carries serious and often overlooked risks. This blog explores why the M.E community is uniquely vulnerable in this new landscape, and why urgent safeguards, training, and harm‑reporting systems are essential.
While this policy shift may sound positive on the surface, it poses significant risks to people with M.E, because the very workforce delivering these interventions is not trained in M.E (not medically qualified) or post‑exertional malaise (PEM).
This is not solely our opinion, this is acknowledged by the UK Government itself.
The Department of Health and Social Care’s own ME/CFS Delivery Plan states that:
“Better education of professionals” is at the forefront of a government plan to improve the lives of patients with ME/CFS.
It also confirms that new training is needed because current understanding is inadequate:
The plan aims to “increase understanding and ensure signs are not missed” to help combat stigma faced by people with ME/CFS.
This is the Government openly admitting that:
- Healthcare professionals are not adequately trained
- M.E signs are being missed
- Stigma persists due to lack of knowledge
- Education is a priority because it is currently insufficient
Yet despite this, the Government is expanding NPTs and social prescribing without first fixing the training gap OR creating a system to report harms from NPTs.
This is a recipe for harm.
The UK Government is rapidly scaling up:
- Social prescribing
- Community wellbeing activities
- Exercise‑based programmes
- Lifestyle interventions
- Psychological therapies
- Nature, arts, and volunteering schemes
But social prescribers, link workers, and community providers still receive no mandatory M.E/PEM training (this issue will also impact at least half of those living with Long COVID who also experience PEM – they may or may not have a M.E diagnosis)
This creates a high‑risk environment:
NPTs often involve exertion (physical and mental)
For people with M.E, exertion can trigger post‑exertional malaise (PEM), the core, disabling symptom of the disease.
Providers may unknowingly recommend harmful activities
Without training, they may encourage:
- Graded exercise
- “Building stamina”
- Nature walks
- Volunteering
- Group activities
- Mind‑body programmes
All of which can cause long‑term deterioration.
NPTs are incorrectly assumed to be “low risk”. For M.E, they are not low risk, they can be catastrophic.
The Government’s strategy aims to reduce reliance on medication and shift toward “low‑cost, community‑based” alternatives. For M.E, this is harmful because it:
– Reinforces the false belief that M.E is a “wellbeing” issue, if policymakers see M.E as something treatable through activity or lifestyle changes, it undermines recognition of M.E as a serious biomedical disease.
– Diverts funding away from biomedical research, when NPTs are framed as the solution, investment in:
- Immunology
- Neurology
- Metabolic research
- PEM mechanisms
- Biomarkers
…becomes even harder to secure.
– Embeds outdated narratives, the more M.E is pushed into community settings, the more it risks being misclassified as:
- A behavioural issue
- A motivational problem
- A social isolation challenge
This reverses years of advocacy progress.
– Reduces clinical engagement, less contact with clinicians means fewer opportunities for:
- Diagnosis
- Data collection
- Research participation
- Specialist referral
This widens the research gap.
Why this matters for the Shake It UP Campaign
As NPTs expand, harms will increase, not because providers are malicious, but because they are untrained.
Right now (despite M.E. Foggy Dog campaigning on this issue since 2021):
- There is no national reporting system for harms caused by NPTs
- There is no requirement for link workers to record adverse outcomes
- There is no mechanism for M.E patients to report deterioration
- There is no dataset informing policymakers of risks
This means the Government is making national policy without understanding its consequences.
We need a reporting system because:
- PEM‑triggering activities can cause long‑term or permanent deterioration
- NPT harms are currently invisible in NHS data
- Policymakers assume NPTs are “safe”
- The M.E community becomes collateral damage
- Future policy will be shaped by incomplete evidence
If the Government wants to expand NPTs nationally, it must also commit to tracking harms nationally.
What We’re Calling For
The key ask of Shake It UP-
– A national reporting system for harms from NPTs.
If NPTs are rolled out at scale, harms must be measured at scale.
We also ask for assurances on –
– Recognition that M.E requires biomedical research
NPT expansion must not replace scientific investment.
– Policy that acknowledges M.E as a complex biomedical disease
Not a wellbeing issue or a lifestyle problem.
– Inclusion of M.E experts and patients in policy design
Nothing about us without us.
– Mandatory M.E/ PEM training for all social prescribers and link workers (though these are not medically trained HCPs so this is unlikely to come to fruition)
No training = unsafe care.
The Government’s 2026 shift toward non‑pharmacological treatments may reshape care across the UK, but without M.E‑specific training, safeguards, and proper oversight, it risks exposing our community to avoidable harm. As long as social prescribers and community providers remain untrained in M.E and PEM, people with M.E will continue to face unsafe recommendations, worsening health, and a system that assumes these interventions are “low risk” simply because no one is measuring the consequences.
If the DHSC wants to build policy around NPTs, it must also commit to collecting the data that shows how these interventions affect people with complex, energy‑limiting conditions. Without a national mechanism to record harms, policymakers are making decisions in the dark, and the M.E community pays the price.
Shake It UP exists to make sure that doesn’t happen. We will keep pushing for transparent harm‑reporting systems, and for evidence‑based policy that recognises M.E as the serious biomedical disease it is. Our message remains clear: the M.E community must be understood, respected, and protected in every decision that shapes the future of care.