ME/CFS Treatment Without Boundaries!!!

I wrote this article, post diagnoses 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.

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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.

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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.

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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.

A step in sand

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?

Kevin Walkinshaw

BSc (Hons) Occupational Therapist

All comments Welcome!


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9 Responses to “ME/CFS Treatment Without Boundaries!!!”

  1. Simon Phillip May 8, 2013 at 9:44 am #

    A very well reasoned eloquent piece. I too have been diagnosed with ME around the same time as you. Funding has finally been granted for the clinic (2 years later), however, how much practical use the “treatment” will be I have yet to discern. Having lived with (diagnosed) ME for over two years (and quite possibly nearly 8 years undiagnosed) I doubt that they will bring anything of use to the table. I find it extremely frustrating that it is viewed as a psychiatric disorder in this country. It’s not, it is physical! You can attribute a psychiatric label to any chronic illness, especially one which takes away so much of a persons ability to live a “normal” life, however, they fail to look at the root cause of the illness and to treat that. Let’s stop fighting a rear guard action by treating the symptoms and look for a cause and cure. Of equal importance, please stop treating sufferers/ victims as malingering self pitying drama queens. I would love to see one of the cynical critics actually experience a week of this illness! I have been fairly lucky, I still have mobility, albeit painful and restricted and manage to work full time. My life however, has been dramatically impacted, as has my relationship with my wife and children, as I am either physically unable or too tired to give them the attention that they deserve.

    • Kevin May 8, 2013 at 11:19 am #

      Well said Simon, unless you suffer, have suffered or live with someone who does suffer from this illness you will have little idea of how much this illness affects the individual. Unfortunately society seems not to validate someone’s literal view of how they are affected. They require empirical evidence! With the little that’s been spent on research this evidence is either written off due to the size of the studies or the nature of the research. Lets hope this new spark of interest in ME/CFS research can blow the psychiatric view out of the water for good! Here’s to a brighter future and validation for all those who live with this most devastating illness.

  2. Susan June 26, 2013 at 9:06 am #

    How good to see a well written piece on this most disabling condition. I like you am, but not for much longer a professional in the health service struck down last sept, following a vaccination. As a nurse I have been appalled that the way this condition has been managed. My gp who is very sympathetic could not give me any advice , other than dont stop your family and friends visits, they are helpful to you. He was treating me as a depressed person. Actually the visitors that visited were making me boom and bust, because I would rise to the occasion every time and then lay in bed after to recuperate. I have only just seen an OT nine months on, who has given me some advice and actually understood my language. She has suggested reducing visitors and lessening time they come for. My only concern is that she recommends graded exercise.

    So your right in the health service normally we do a good job at helping people get better , through multidisciplinary working. The advice to give to us is easy as you mentioned above. So why oh why are the basics not getting through.

    • Kevin June 27, 2013 at 8:52 pm #

      Thanks Susan

      Maybe a simple pack can be put together, which all GP practices could refer to. Maybe Harm Reduction Do’s and Dont’s if you have been diagnosed with or think you have ME/CFS. “Simples”. Of course this should only be a first step approach and a more detailed approach could be delivered in one to one sessions with an expert advisor at your local GP surgery.


      • Susan June 28, 2013 at 1:05 pm #

        Would be a brilliant idea and would work on if well. As have done locally for other topics in my area for hospital staff. Anyone willing to work on one? When I recently handed my gp the ME association new book, he embraced it , which is encouraging. He said “will this tell me how to get my patients with ME better” .. I wish I had highlighted certain points as he won’t read or remember it as its a large document. I was pleased with his response and do believe the tide is turning.

  3. Hannah February 25, 2014 at 1:16 am #

    I found your article very interesting, I have recently been I offically diagonesed by my GP and am now waiting for my referral to specialist clinc, this is all very new to me, if any of you have created a useful do/donts doc i would greatly appreciate a copy, as this is all a lil daunting

  4. Joey February 1, 2015 at 2:38 am #

    Hiya all,
    I’m in Adelaide South Australia and am astounded as a newly diagnosed ME/CFS (though I’ve been bed bound for a year now) patient, how little support is out there. I really hope this changes as this is so isolating… I literally feel like I’m dying and there’s no help.

    One doctor told me not to come back unless I got a hobby as I’d be wasting his and my time if I did… I have to have a coffee just to have a bath/get dressed/brush my teeth etc. I desperately want to hear from others so I don’t feel so utterly hopeless and alone. This is 100% physical… Something physical is going on here and living through this I find myself wanting to just end it all on a regular basis. This is no life being in bed day in day out in pain.
    Best wishes,

    • Kevin February 6, 2015 at 11:29 am #

      Hi Joey

      Having ME/CFS can be a very isolating illness. I would advise you contact your local ME/CFS Support group. You do not need to suffer in silence. There is also a strong network of ME/CFS support groups online. Guess that figures since most of us rarely get out at all. We all have experience strength and hope to share and many of us do make partial and full recoveries. However, this take time and patience. Hopefully you will find a Doctor or Alternative Health Practitioner who understands the condition, offering you support and understanding. Much needed when you are first diagnosed. Best wishes

    • Michelle April 5, 2017 at 6:33 pm #

      You are NOT alone. There are groups advocating for us. Google the “millions missing” campaign. They put out hundreds of pairs of empty shoes in major cities around the world to represent you, me and the millions of others like us. There is also a Facebook group called Myalgic Encephalomyelitis Global-a closed group with hundreds just like us. They give me inspiration on the days I’m bed bound and have been the best source for treatment and help.

      Blessings for healing and better days ahead.

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