The Ripple Effects of Stigma

This post looks at the effects of ‘psychologisation’ and stigma – in particular as it relates to M.E. (or ME/CFS or Chronic Fatigue Syndrome). The effects are far-reaching and have blocked decent support, research, treatments and media coverage of this illness for decades.

Therapists need to understand both the impact of this history on patients and the way the illness itself requires therapists to develop new tools and approaches to their work.

It’s a long post – take it in stages if you need to. It’s broad rather than deep, and gives you lots of leads and links to chase up.

ME becomes ‘psychologised’ – the early days…

In 1969 M.E. was classed by the World Health Organisation as a neurological illness – and the British NHS and many other health bodies around the world agree. However, just one year later a paper by Colin McEvedy and William Beard was published on outbreaks of M.E. which has influenced attitudes ever since. It argued that the outbreaks were ‘hysteria’ or ‘psychosocial’ in origin. It brought the model of ‘psychosocial illness’ (psychological or social issues manifesting as physical problems) to the discussions about M.E..

As journalist George Monbiot writes:

This highly questionable, not to mention untested, hypothesis set the scene for the dismissal and undermining of the illness and the patients who suffer with it. The illness came to be seen as trivial, fake and not worthy of serious biomedical research, and the patients who have it have been disbelieved and ridiculed.

Research funding

What was needed was a lively research environment looking at the immunological, metabolic, vascular, neurological clues to the causes and effects of M.E.. This might have come about had patients been believed.

Instead, charities valiantly funded promising small studies, hoping to persuade government funders that there were areas worth spending more research money on. Sadly, what little government research money there was often went to low quality studies into assumed psychological causes and treatments instead.

This was not money well spent: an official review by the National Institute of Health and Care Excellence in 2021 showed that millions of pounds’ worth of research into psychological approaches to diagnosing and treating M.E. produced results of ‘low’ or ‘very low’ quality. It’s staggering – see page 71 of this pdf document if you’re minded to chase up the details.

Funding statistics for the UK

The two graphs below clearly show disparities in government funding for research into M.E. in the UK, compared to other diseases of a similar severity and impact.

Thank you to CrunchME project for this graph – licensed under the Creative Commons License.

Thank you to CrunchME project for this graph – licensed under the Creative Commons License.

Woolly definitions lead to woolly research studies

Badly targeted research allowed loose definitions of the illnesses to arise. A crucial symptom – ‘post exertional malaise’ – was known about at least as far back at the 1980s. Despite being hard to measure it was startling and unusual enough to be one of the most important features of this illness – but was not required for some diagnostic and research definitions of M.E..

This meant that scientists wrote articles that appeared be about M.E. but where the people studied included those without post exertional malaise and who therefore likely had other conditions (eg more generalised and temporary post-viral fatigue or even ‘chronic fatigue’ as a symptom of depression and other serious mental illnesses – these respond in very different ways to graded exercise therapy than ‘M.E. proper’ does). Whole research projects were compromised by this failure to clearly define the illness, despite the relevant information being available.

Impact of wrong-headed research priorities

This devastating use of the meagre funds allocated to M.E. research has had huge impact:

• it left patients almost entirely alone and unsupported by doctors and scientists – sometimes for decades
• it made the illness seem milder and more trivial than it is
• it left the medical profession without viable tools when facing post-covid syndromes (Long Covid) including M.E. triggered by coronavirus infections
• it misinformed health care professionals about the cause and optimum treatments, leading to tragic mismanagement of cases
• it derailed the careers of scientists who were committed to biomedical research into M.E. but unable to get research grants
• it enabled a whole eco-system of charlatans and chancers to develop around the illness of M.E., preying on desperate patients and their families
• it misled some counsellors and therapists into thinking clients with M.E. needed to ‘process their childhood trauma’, or ‘cajoling’ into increasing their exercise levels – in short, treating their clients like malingerers and hysterics and denying them the emotional support they needed to cope.

Attitudes of medics

The first professional a sick person turns to is often a medical doctor – and at this point M.E. patients can face a rude awakening. Doctors can have attitudes to patients with M.E. based on low quality psychological research, faulty definitions of the illness and on the active promotion of this research in the media.

Conversations on medical reddit forums give us a hint of the impact this has. Reddit discussions were analysed using machine learning and natural language processing tools for a paper on doctors’ attitudes to different illnesses. Attitudes and language were compared across several medical conditions:

The impact of attitudes like this, and the related misdiagnosis of serious illnesses as ‘psychosomatic’, are truly devastating for patients. It affects patients’ confidence and ability to access future medical support. A 2025 study into patients with Lupus who had previously been misdiagnosed as ‘psychosomatically ill’ (led by Dr Melanie Sloan at the University of Cambridge) demonstrated that these people doubted their self worth and found it difficult or impossible to rebuild their trust in health care professionals.

It is therefore unsurprising that the first study of the mental health of ME/CFS patients in Switzerland found that:

‘Disbelief and disregard’

The Chronic Illness Inclusion Project looked at patients’ experiences of health care in a 2023 publication about women with energy limiting chronic illnesses. Their report, Disbelief and Disregard: Gendered experiences of healthcare for people with energy limiting chronic conditions, highlights the ongoing strain of sexist assumptions that affect the experiences of women who have these illnesses. (Men, conversely, suffer by being stigmatised as ‘less manly’ for getting M.E., for example.)

In addition to waiting a long time for correct diagnosis the study revealed that:

‘Harmful treatment strategies’ are particularly dangerous for M.E. where the old ‘standard treatment’ of Cognitive Behaviour Therapy and Graded Exercise Therapy were widely accepted for many years by much of the medical profession. These approaches are now specifically discouraged in the 2021 Guidelines from NICE, following their exhaustive review of evidence, and thought to risk further harming people with M.E..

The likely over exertion encouraged by Graded Exercise Therapy can risk triggering relapses, and Cognitive Behaviour Therapy is entirely unsuitable as a curative strategy for M.E. (but, in specific forms, the latter may have uses as a tool for coping).

So…what can therapists do?

Understand the historical and social context

Be aware of the history. As with racism or any other stigmatising behaviour, attitudes towards M.E. inform the life experiences of those who are targeted. It’s impossible to understand what your client with M.E. has deal with if you don’t understand the social impact of living with this diagnosis. This stigmatising behaviour can affect:

• how doctors and other health care professionals treat people with M.E.
• how patients are assessed by insurance companies and the state benefit system
• how they are are treated by colleagues and managers in their work places
• the care they experience at the hands of professional carers
• their relationships with partners, friends, children and wider communities
• how the media talks about people with ME and Long Covid and how that in turn can impact self esteem and feelings of self-worth amongst patients.

Understand just how bad it can be

Because of the trivialising names and the attitudes we see in the media, the serious nature of M.E. is widely underestimated. So, how bad is it really? A study attempted to quantify this and compare the ‘health related quality of life’ (HRQoL) of ME patients with patients suffering one of several other serious health conditions finding that:

One of the cruelest ironies of the way that M.E. has been falsely ‘psychologised’ is that patients are (quite reasonably) scared to access psychological support even as they face the devastation this illness causes in their lives, and the lives of their families. Many are scared to approach therapists for fear of further gaslighting and undermining.

By understanding how bad it can be you can also start to imagine the realistic fears that patients have of not being able to pace effectively, and not being able to avoid a relapse or ‘crash’.

How does this apply to therapy and counselling?

The need to use pacing techniques to avoid PEM (post exertional malaise) means that many standardised approaches to therapy and support will be wrong or counter-productive. Pacing requires:

• constantly sacrificing
• constantly talking yourself out of what you think you can do (and want to do)
• carefully monitoring the effects of any actions
• mental and emotional fortitude to plan and manage daily life
• coping with the grief and frustration this causes in as ‘low energy’ a way as possible – no cathartic drama here, please!

Good therapists have tools they can use, but almost all will need to be adapted.

Next steps

• Check out our resources and plans pages
• See our page on the Dialogues for a Neglected Illness video project and choose one or more to watch
• Sign up for our newsletter
• Share this link with friends and colleagues

Let’s transform therapy and counselling so that people with M.E., Long Covid and other chronic illnesses are better supported!

---

Photo credit: Thanks to Tim Mossholder for the photo at the top of this post.