ME/CFS Treatment Without Boundaries!!!

I wrote this article in late 2011, while coming to terms with a recent diagnosis of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). Looking back, the article was an attempt to process the reasons why I had yet to receive any treatment or treatment advice from the National Health Service (NHS). I have worked within the NHS for various teams and trusts. I understand the usual processes of assessment and treatment including the necessity for resources to be as efficient as possible. However, when I researched the reasons for a lack of appropriate ME/CFS treatment it became evident that it was not solely a resource issue and many other factors were included. Deeper rooted answers lay in the reasons why our healthcare system has failed in the treatment of ME/CFS. I conclude the article with some suggestions for the future treatment of ME/CFS and I anticipate that the facts speak louder than indecision and poor science.
The World Health Organisation (WHO) classifies ME/CFS as a Neurological Condition. This would put ME/CFS strictly in a physical health category. The National Institute for Clinical Excellence (NICE) has recognised this classification. However, NICE do not commit fully to this categorisation citing differences of opinion within the elected committee. Due to these differences the NICE guidelines also relate psychiatric causes as possible reasons for ME/CFS.

Treatment recommendations within NICE Guideline, (Chronic fatigue syndrome/Myalgic encephalomyelitis) include Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT). CBT has developed since the 1960’s into a variety of models to treat a range of diseases. A psychological framework is used to monitor thoughts, which are said to have a cyclic affect on feelings, behaviour and physical sensations. The CBT hypothesis focuses on a person’s perception of events being unhelpful rather than the situation itself being the cause of distress. The title Graded Exercise Therapy speaks for itself once a baseline of physical activity has been established exercise is increased at a pace suitable to individual requirements. Activity management, sleep management, diet, relaxation, equipment to maintain independence are also cited within the guideline as helpful. However, GET and CBT are promoted as the optimal treatment.

There is disagreement surrounding these treatments as professionals, support groups and charities argue that the endorsement of GET and CBT are superficial strategies and do not address the causes of ME/CFS. There have been reports of patients being worse off after a programme of GET and those completing a CBT course have felt little or no benefit. Charles Shepherd Medical Advisor to the ME Association has warned practitioners offering GET to be prepared for litigation by offering a potentially harmful treatment. Controversy also surrounds the funding of research into ME/CFS. Lobbyists argue that the advocates of a psychiatric cause have received the majority of funding; arguing that financial support has been directed away from the real physical causes of ME/CFS.

What this means for your treatment?
As we have seen the NICE Guidelines treatment preference for ME/CFS is CBT and GET. These prioritised treatments are delivered in ME/CFS management teams throughout the UK. Activity Management (Pacing) is also offered as is advice on lifestyle changes such as a healthy diet or stress reduction. Practitioners within the team have different therapeutic backgrounds including psychology, physiotherapy and occupational therapy; although some services may also include a dietician. Treatment is often run in group settings requiring the patient to attend the groups over a period of weeks. One to one work may be offered to individuals who meet the service criteria. There is currently no home attending service. This means all group and one to one work is carried out within a community health venue or various locations within the community.

Assessment for ME/CFS is a lengthy process. First you need to have suffered symptoms for over four months. This includes various blood tests to rule out other causes for your symptoms. This process is important as other serious conditions could be causing fatigue, muscle weakness or many of the other symptoms associated with the title ME/CFS. If no other causes are found then your GP may diagnoses ME/CFS. However, it is more likely that your GP will refer to a local specialist consultant. The specialist consultants vary from region to region differing in medical backgrounds including immunology, virology, neurology, infectious diseases, paediatrics or psychiatry.

Will there be a waiting list for assessment by a specialist? Yes more than likely this could add at least four months wait before a ME/CFS diagnosis is given. If you receive a diagnosis of ME/CFS (approximately 50% of those seen by specialists will not be diagnosed with ME/CFS) then a further wait may be expected before you see a practitioner from the local ME/CFS team; a possible wait of another four months for their assessment.

The assessment process does not end here. In some cases the ME/CFS team will further assess your symptoms and may not attempt to treat ME/CFS if they conclude that an additional illness is causing fatigue, for example depression. I do not believe this would happen in other neurological or autoimmune conditions, as treatment teams would treat the primary cause while referring for additional specialist services. For example would a person suffering Parkinson’s disease be denied specialist services if they also had a severe mental health condition?

Why would a service disseminate the diagnosis? Reasons may include a lack of resources, as most ME/CFS teams run on a part time basis and have to see patients within set time limits. Could it be due to a lack of investment into the physical health biomarkers to confirm diagnoses of ME/CFS? Is it due to a lack of understanding by the ME/CFS team practitioners, regarding the condition and physical symptoms of ME/CFS. NICE guidelines do not fully acknowledge ME/CFS as a neurological condition. Thus taking a motivational approach to treatment, this approach can be replicated within mental health services.
It is likely to be a combination of many factors. However, the main consideration is the time frame in which a person with ME/CFS is first given advice and treatment. Some individuals have waited over two years before a diagnosis or treatment. This has obvious effects for the progression of illness from mild ME/CFS to moderate ME/CFS to severe ME/CFS. Attaining benefits and insurance claims would be difficult without a diagnosis if not impossible. Employment difficulties may arise and without a diagnosis or treatment, employment may be lost and the condition made worse. How a person is able to manage employment with chronic conditions is not a lone venture. Detailed plans to manage symptoms need to be agreed between employee and employer, ergonomic assessments of the work place need to be completed. Understanding from senior staff and colleagues will be essential while a person adjusts to ME/CFS parameters.

This article is painting quite a bleak view of the expected treatment of ME/CFS within the NHS Healthcare system. Unfortunately this has been my personal experience. I was diagnosed with ME/CFS in June 2011. I first encountered problems with symptoms of ME/CFS in June 2009. As I write this article it is September 2011 I have yet to hear one piece of advice regarding ME/CFS from a health professional “take it easy” does not qualify as advice for such a complex condition in my opinion.

I believe stigma surrounding ME/CFS is the driving force towards a lack of availability to diagnosis and treatment for those with ME/CFS. However, stigma does not only include a misunderstanding regarding the physical biomarkers of ME/CFS it also has connotations for a wider significance towards the complete denial of ME/CFS being a physical health condition. I do not ignore the psychological aspects of treatment and often advocate Mindfulness based approaches for treating ME/CFS. However I also do not ignore the hundreds of research articles relating to the biochemical markers of disease in ME/CFS and the very real physical signs of this disease.

A colleague of mine recently told me he had looked the condition up on the internet. He said he was aware of the disparity between the physical health approach and the mental health approach. He told me he sides on the mental health side and thinks I must have been under a terrible amount of stress prior to becoming unwell. He also remarked on how well I looked, quizzed me on whether I had walked to town and was wondering when I would return to work. When I asked him what he thought the reason for the glands on my neck causing me constant pain and why they were protruding, he commented that maybe I was a little run down. He concluded by saying he did not want to quarrel with me about the condition and the subject was changed to a lighter topic. This insignificant conversation is possibly a reflection of what happens when society has fixed ideas and evidence to the contrary is ignored.

If those conducting research are also involved in industry, receiving monies or not, is the research in the best interests of the public? We only have to look at the criticism of the PACE trial for clear examples of research members and a link to commerce. This connection is also true of the pharmaceutical and food sciences as a number of influential research scientists reside on advisory boards of directly related trade. I would employ you to read ‘The China Study’ by Professor Colin Campbell for inside knowledge of food science bias.
Let us more forward and use a sensible approach to ME/CFS treatment. While we wait for a suitable medical bio-marker to determine diagnoses we risk the ruin of many lives by allowing ME/CFS symptoms to become worse and develop into a severe life threatening disease (yes people actually die from ME/CFS).

I suggest we have clear harm reduction advice prior to diagnoses. This means those suspecting they have ME/CFS can have suitable advice to prevent further deterioration. This is easy to do! A screening tool can be devised, assessment clinics can be set up with educated practitioners from various backgrounds and advice given on diet, pacing, stress reduction, work, benefit application and family and carer support. It’s not as if this information does not already exist. This is how we worked when I was involved within the treatment of substance misuse and it worked, people were seen within two weeks. Why should we have to wait for months or even years for treatment, which at its best is a treatment of end stage disease?

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Kevin Walkinshaw
BSc (Hons) Occupational Therapist
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