Oslo Chronic Fatigue Consortium ‘New Hope’ is “More Unhelpful Nonsense”!

ME Association Statement

After the appalling GP learning module from New Zealand last week, which was recommending graded exercise therapy and the Lightning Process for people with ME/CFS, we now have more unhelpful nonsense from the ‘Oslo Chronic Fatigue Consortium‘ aimed at health professionals in Norway.

We didn’t know anything about this Consortium, but it includes several professionals from the UK who don't like the 2021 NICE Guideline or its evidence-based recommendations.

The ME Association's position on ME/CFS is aligned with that of the National Institute for Health and Care Excellence (NICE) and the 2021 Guideline on ME/CFS (NG206), the Department of Health and Social Care (DHSC) and the work that has gone into the 2024 Delivery Plan, and with what we have learned from the patient community in the last 43 years.

We appear to be in trouble with the Consortium as we are referenced as a source that is allegedly providing too negative and unrealistic a view of ME/CFS (!) and because we are in full agreement with the NICE Guideline. Of particular relevance to the Oslo Press Release, we happen to agree with the 2021 NICE Guideline recommendations that:

  • graded exercise therapy (1.11.14) should not be used,
  • the Lightning Process or therapies based on it should not be used (1.12.27), and,
  • while cognitive behavioural therapy can be used to help people cope with ME/CFS, it should not be presented as curative (1.12.28).

We issued a statement about the use of Exercise in ME/CFS and Long Covid in 2021 before the improved NICE Guideline was published, and we approve of the 2021 NICE Guideline (1.11) Managing ME/CFS recommendations including about Energy Management and Incorporating Physical Activity and Exercise.

There have been some very positive developments taking place in England to try and improve medical and societal awareness and understanding of ME/CFS. We have contributed – along with other stakeholders – to 2 particularly encouraging initiatives recently: The 2021 NICE Guideline on ME/CFS and the DHSC Delivery Plan on ME/CFS.

While we focus on trying to bring positive change on behalf of people who have been neglected for far too long, others are choosing to go against evidence-based recommendations and the overwhelming views of the patient community.

This latest effort from Norway appears to confirm that a concerted effort is underway from a handful of professionals – some of whom have clear conflicts of interest – that are once again trying to self-aggrandise at the expense of people who have been maligned and stigmatised.

Their day is done, and they need to recognise this fact. Instead, they should focus their own energies on the positive developments that have been achieved by working with us all to improve health and wellbeing for everyone with ME/CFS.

For the record:

ME/CFS can affect people of all ages or ethnic backgrounds. It is recognised as a long-term, fluctuating medical condition that can have a very debilitating and unpredictable effect on a person's cognitive and physical capabilities. It is not a diagnosis of exclusion.

ME/CFS can result in relapses and relative improvements and restrict the ability of a person to initiate or complete normal everyday activities. Relapses and improvements can vary in duration and relate to illness and symptom severities. For those severely and very severely affected, relative improvements can be minor, fleeting, or quite rare.

One of the key symptoms of ME/CFS and Long Covid is post-exertional malaise which is defined in the NICE Guideline as:

“The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse.”

Research evidence suggests that there is an underlying disease process involved, which is commonly triggered by an infection, and is causing a perpetuation of symptoms and functional incapacity. A similar process may be occurring in people with Long Covid, as a result of the Covid-19 trigger. In both conditions, people are unable to recover their pre-illness functional ability in the expected timeframe. This might suggest that people who do develop ME/CFS and Long Covid are more genetically susceptible, but we just don't know at this point. However, we are very keen to see more research exploring both ME/CFS and Long Covid.

Other factors that might contribute to poor health are just as likely to affect people with other long-term conditions or who attract a diagnosis that has just as much of a dramatic impact on their life. So-called ‘psychosocial’ explanations and treatments have dominated the scene for 40 years and have not led to any gold standard or conclusive clinical trial evidence, effective treatments or cures. Simply knowing about an underlying disease process or that biological abnormalities exist does not prevent a person from improving or from trying to improve.

People with ME/CFS and Long Covid are highly motivated. There shouldn’t be any doubt about their desire to improve life quality or to recover from their disabled state – to return to employment, education, or assume the roles and responsibilities they had enjoyed before – using safe, effective, and evidence-based treatments. We expect research developments in coming years to complete the jigsaw of knowledge that we have about ME/CFS and Long Covid and to lead to diagnostic tests and effective treatments.

We know that:

  • some people experience relative improvements and that sometimes these improvements are sustained – enabling them to return to the workplace or to education in full- or part-time or voluntary roles that can be completely different to the jobs and careers they enjoyed before ME/CFS. Often, people will have to adjust their roles by reducing hours or changing duties, will require measures in place to help them manage, or will sacrifice other things like a social life.

  • ME/CFS and Long Covid can understandably have a significant impact on mental health as people try to accept, adapt, and accommodate these debilitating conditions which are often subject to prejudice and disbelief. But people do not shy away from seeking mental health support. Having a knowledgeable and understanding clinical psychologist available – as part of a multidisciplinary specialist service or clinic – is recommended by the NICE Guideline. People should be treated holistically, but the biological underpinnings of these medical conditions cannot be denied.

  • for the majority, ME/CFS can for long periods result in few tangible improvements and can mean continued disability with little or no possibility of a return to work or education. This is despite people with the condition adopting the recommended self-management approaches and receiving specialist advice. For people who are severely, or very severely affected, progress can be extremely limited because they are simply too ill even with specialist support. Hopefully, improvements to life quality can still be made, but we must recognise that in rare cases people die.

Research into ME/CFS has been lacking for decades. Significant funding to replicate the many pilot studies that have revealed clues about an underlying disease process has never been available. We hope the DHSC Delivery Plan will reverse this dire situation.

There are many gaps in our knowledge. We don't even know how many people in the UK have ME/CFS or if everyone with a diagnosis is affected in the same way. And we certainly don’t know enough about:

  • those who feel they have fully recovered.
  • what recovery might mean in terms of improved functional ability.
  • how they have returned to work or education.
  • what might have contributed to the recovery.
  • how long recovery might have lasted.

But we do know that there are a lot of unsubstantiated claims about recovery that need to be quantified in good quality clinical trials. People with ME/CFS are desperate for an effective treatment let alone a cure and in the absence of either can be vulnerable to exploitation and, where we can, we challenge these claims so that people with ME/CFS are less exposed.

It is of course regrettable there are no effective treatments for ME/CFS or Long Covid – in the form of drugs for example – or indeed any cure. But ME/CFS and Long Covid are far from unique in this regard. To claim that there is an effective means of recovery is irresponsible at best especially if it means a financial investment with no guarantee of success.

What we do have are effective and safe energy- and symptom-management approaches and an evidence-based set of clinical recommendations in the 2021 NICE Guideline that aim to maximise opportunities for a person to live a better quality of life while they come to terms with a complex, chronic medical condition that can cause prejudice and disbelief.

Dr Charles Shepherd, Trustee and Hon. Medical Adviser, and Russell Fleming, Head of Communications, for The ME Association.

Media Coverage

New hope for ‘incurable' disease that leaves sufferers shattered

“…the Oslo Chronic Fatigue Consortium, which is made up of researchers, clinicians and patients including some academics from the UK, suggests that there is not a “specific disease process” behind chronic fatigue syndromes, including “post-Covid conditions”.

“Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain’s response to a range of biological, psychological and social factors, rather than a specific disease process,” they wrote in the Scandinavian Journal of Primary Health Care. They also said that people living with these conditions should not avoid activities thought to worsen symptoms.

Academics said symptoms are “more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided”. They also suggest people with chronic fatigue syndromes should avoid “prolonged rest, social isolation and sensory deprivation”.

“We propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities,” the authors wrote.

A National Institute for Health and Care Excellence (Nice) guideline, published in 2021, said that graded exercise therapy should no longer be recommended for people with ME/CFS. The guideline says ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms, and says any therapy will depend on the patient’s preferences and should not represent a fixed increase in activity.

NottinghamshireLive: New hope for ‘incurable' disease that leaves sufferers shattered by Ellie Pickover & Elaine Blackburn | 25 September 2023

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