Research holds the key

Reflections from a 23-year diagnostic odyssey

Today’s post is from a patient with severe ME/CFS who, when health permits, is a volunteer involved in advocating for increased research investment into ME and post-infectious diseases. They would like to remain anonymous. Before becoming ill, they were active, loved photography, nature and the outdoors, worked full-time and spent their free time hiking in the countryside with their dog and a digital camera.

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Throughout my ME journey, the NHS has most definitely not been there for me. My experience has been dismissal, gaslighting, patient-blaming and being made invisible—you vanish from the system, too ill to fight for non-existent medical care.

Searching for a diagnosis

I’ve had ME since I caught glandular fever when I was 20. I suffered two episodes of profound exhaustion about a year apart. Each time, the doctor told me that some people just take longer to recover from viruses; my persisting issues were dismissed for years until I gradually internalised my experience as normal. It wasn’t.

I limped on despite sleep disturbance, pain, grinding fatigue, throat infections, swollen glands and episodic (then unidentified) post-exertional malaise, which left me with flu-like symptoms; aching, exhausted and unable to get out of bed.

In my thirties, I was misdiagnosed with depression and possible bipolar disorder, even though the symptoms didn’t fit. In my forties, I was correctly diagnosed with severe endometriosis. “Eureka!” I thought. “This explains my exhaustion and immune system problems.” But it didn’t.

Twenty three years later

The 2021 NICE guideline advises ME/CFS should be suspected after six weeks and the recommended lead time for diagnosis is three months.

My ME worsened about seven years ago, following endometriosis surgery, viral meningitis and a GET (graded exercise therapy)-like phased return to work. However, it took another 14 months to get an official diagnosis of “classic” ME/CFS by the ME/CFS specialist service, some 23 years after first developing the illness.

During this time, an ideological neurologist attempted to label me with functional neurological disorder (FND). I will never forget stumbling out of that appointment feeling manipulated, humiliated and traumatised, with my belief in the inherent goodness of the NHS in tatters. This is gaslighting. It’s an insidious stigmatisation and psychologisation, inflicted particularly on women with the disease.

Ever since, I’ve attended appointments chaperoned by my husband, who has witnessed, horrified, the medical prejudice, such as being told to “go home, have a glass of wine and chill”, that I’d be “fine”. It has left scars; I avoid the NHS as far as humanly possible and struggle to trust clinicians. Perhaps the first step of “being there for ME” is belief—simply trusting what patients say and treating them with basic respect and dignity.

If the NHS had diagnosed me quickly, I could probably have avoided disease progression. Instead, ME has had a devastating impact on my life: I battle constant, severe symptoms, have postural orthostatic tachycardia syndrome/orthostatic intolerance (POTS/OI) and have become homebound with long stints confined to bed. I lost my job, and became unable to cook or do chores. I am now a part-time wheelchair user and rely on the help of my husband and carers.

Treating ME properly

Sadly, ME is the disease where your treatment gets worse the sicker you get.

Following my diagnosis, my GP surgery became very dismissive. I confided my concerns about the extent of my decline to a GP I thought I could trust, only for them to suggest an inappropriate psychiatric in-patient placement. The surgery later used the NICE guidance as an excuse to wash their hands of treating my ME symptoms altogether, whilst conveniently ignoring the part that says they should monitor me, treat symptoms and produce a care plan.

Discovering there was a “specialist service” briefly gave me hope. But for ME, it was not the usual pathway to a consultant following a diagnosis. Instead, “treatment” consisted of six appointments with an occupational therapist to teach pacing and mindfulness, with no clinical monitoring, prescribing or onward referral, and no access to wheelchair services or a care needs assessment.

To add insult to injury, I later found out that the therapist blamed me in her notes for my ongoing deterioration, falsely claiming that I was obsessed with my symptoms rather than factually reporting their worsening in the naive belief that I would get some help. I was betrayed by the one service that should have known better.

I belatedly found out about support services through the patient community. I managed to access them thanks to subsequent referrals by mental health services, after my mental health finally fell off a cliff due to the lack of support.

What would an NHS that is #ThereForME look like?

In an NHS that is #ThereForME the Government would obligate all local Integrated Care Boards to commission clinically-led, non-psychiatric specialist services.

A clinical ME service should be based out of an established specialism that patients could trust, such as rheumatology or immunology (not neurology or psychiatry). Giving ME a proper clinical “home” would enable the built-in, ongoing medical education that happens for other diseases, as scientific understanding advances.

There would be a nationally standardised referral pathway and a clinical specialist nurse and consultant, as a minimum, in each region’s multidisciplinary medical team. They would establish and monitor functional capacity, carry out reviews and make interventions if there was deterioration. A medical service could directly prescribe treatments for a variety of symptoms to stop patients bouncing between specialists, and it could make onward social care referrals.

There would also need to be a pathway or mobile national service capable of addressing the complex needs of bedridden patients.

Research holds the key

What will set us on the right path?

We already know the patient research priorities—the James Lind Alliance Priority Setting Partnership (JLA PSP) was a formal, structured prioritisation exercise undertaken just a few years ago. We need to use this to form a detailed agenda and roadmap.

Nailing a diagnostic biomarker, or biomarker set, has the power to finally stop all but the most entrenched clinicians subscribing to the discredited theory of psychological causation. It can close that final chink in the door to the psychogenic rabbit hole that UK research and clinical practice fell into, and open a new door, this time to accelerated, biologically based, research and treatment.

Globally, it is an exciting time for ME research, with several strong leads in the past few years, such as the potential role of WASF3 and of IL-6. Dutch scientist Rob Wüst has also extended his Long Covid research on muscle tissue into ME/CFS.

Meanwhile, in the UK, the only large study funded recently is the “Decode ME” genome-wide association study, aiming to find underlying genetic bases for the disease by analysing the DNA of ME/CFS patients. That beacon of hope is due to publish later this year and should give us renewed impetus.

There are other green shoots in the biomarker space—the ME Association is funding research investigating whether Ron Davis’ electrical impedance discovery can be turned into a diagnostic test, and Oxford's Karl Morten is exploring the potential of a Raman spectroscopy diagnostic.

Taking UK ME research to the next level

The previous government’s interim Delivery Plan was a start, but its research chapter lacks ambition.

To shift the dial a strategic approach is needed. We need to go beyond standard approaches such as highlight notices and one-off funding calls, which have failed to build sustained growth in the UK’s research sector.

After decades of psychologisation, there is scant biological research capacity or capability left in the UK.

There is a lack of principal researchers—who get projects funded and incepted—while early career researchers struggle to stay in the field due to the lack of suitable projects.

One solution, adopted in other countries, is a consortium-based “research centre of excellence” for ME/CFS. Similar hub and platform structures have been used in UK government initiatives for other conditions. Patient involvement (PPI) needs to be at the heart of this.

This, alongside a substantial long-term funding stream, could deliver against a research roadmap. A research centre could conduct clinical trials, and grow capacity and scale by promoting ME research to new principal researchers and by supporting early career researchers.

We also need research clinicians. ME services would need to work in partnership with a national centre to enable patients to participate in clinical trials—in particular more severe patients, who are often overlooked due to logistical challenges but who may hold the key to breakthroughs.

So, that is my personal take on what “being there for ME” might look like. Now is the time to reboot and accelerate ME and Long Covid research. It’s time to address the appalling lack of care ME patients receive from the NHS.

That’s why I fully support the policy campaign by the #ThereForME team.