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Gold, incentives and meh

What I learned about chronic fatigue syndrome from my research project

Letter from Emma Davies, a medical student at Brighton and Sussex medical school

For my fourth year medical school research project, I reviewed the process of assessment and diagnosis of CFS/ME within primary and secondary care.

It raised some interesting questions about the issues of diagnosing these disorders in primary care and how GPs can help these patients even with limited time and resources.

The diagnosis of CFS or ME relies on extensive history-taking and recognition of a characteristic pattern of symptoms. Four hallmark features are: post-exertional malaise, (‘payback’ where intense, prolonged exhaustion occurs after activities which used to be normal for the patient), cognitive difficulties (‘brain fog’), sleep disturbance and chronic pain.

The distinction between chronic fatigue and CFS/ME can be hard to establish in a ten-minute GP appointment. NICE guidance includes the dreaded phrase that GPs are ‘well placed’ to provide early assessment and diagnosis for patients. However, my placement in a specialist CFS/ME centre highlighted the intensive evaluation of patients that takes place there and therefore the challenges of making a definitive diagnosis in primary care.

So what can a GP do for these patients? Before a diagnosis has been established, GPs can help patients with individualised advice on managing their symptoms including sleep hygiene, therapeutic rest, and relaxation techniques on initial consultation.

GPs can also help these patients by making the referral as detailed as possible. The referral should ideally contain a narrative of the patient’s symptoms, findings from examination, results of routine investigations and previous medical reports. This will speed up diagnosis and allow patients to get treated sooner.

At the end of my project, I came up with some ideas to easily improve the diagnosis of CFS and ME. I suggested creating a new referral form to make the transfer of information from referee to receiver more efficient and a patient information leaflet to be given to patients on referral to provide early symptom management advice. Hopefully this will help patients get the best care and make it easier for GPs to manage these patients.

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Readers' comments (8)

  • Azeem Majeed

    Thanks - a very interesting article.

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  • Reading this I get an impression that there is some highly effective treatment specialists have access to for these conditions. And it can only be offered if I fill in referral forms correctly? Please enlighten me further.

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  • Me, myself, I, what really works in CFS is PR, pragmatic realism. The last thing these patients need is referral to a service that has a vested interest in re-inforcing their beleifs and behaviours. Empathic and truthfull support from a doctor who has known tehm for years is far more valuable than short term enthusiasm from specialists who won';t be there after teh next round of austerity cuts.

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  • There are no specialist services with effective treatments in the UK except for autonomic units for the dysautonomic symptoms of ME/CFS.

    Look up Rituximab. It's a promising treatment currently in phase 3 trials in Norway. When the NHS has something that helps to offer, then start making referrals.

    B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment
    Øystein Fluge , Kristin Risa, Sigrid Lunde, Kine Alme, Ingrid Gurvin Rekeland, Dipak Sapkota, Einar Kleboe Kristoffersen, Kari Sørland, Ove Bruland, Olav Dahl, Olav Mella
    Published: July 1, 2015

    PLOS 1

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    all else is woo woo

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  • The IOM report on ME/CFS concluded that it is a disease which is defined by the fact that 'exertion of any type, physical, cognitive or emotional, may adversely affect many organ systems'. This supports Ramsay's original recommendation for complete rest from the inception.

    If GP's diagnosed based on the typical constellation of symptoms, plus a narrative of a previously energetic, positive, conscientious person, often one committed to athletic activities, who, within a short period of time, and without any particular traume, becomes incapacitated (so no psychiatric narrative)....then the best advice to the patient is to go home and go to bed for a few weeks. And follow up with support aimed at conserving muscular exertion, both at home and at work/school/university.

    This is the 'treatment' most likely to allow the patient to improve or even recover. It is also the treatment most economical for the practice. While conscientiously testing for possible alternative diagnoses, the patient can be assured that for ME/CFS there is as yet no effective medical treatment, and the exertion involved in a visit to the surgery is bound to be counterproductive, a day of rest would do more good.

    Antibiotics, promotion of products that suppress symptoms, the worship of exercise and the pressure to keep going at all costs have produced a cultural miliieu that practically guarantees that anyone with ME/CFS will be set on a path to systematic worsening into severe and very severe ME. Especially if Graded Exercise gets in the mix.

    It's old-fashioned to think that when you get sick, you go to bed, and stay there until you get better. We forget that it is our immune systemt that has to 'fight the illness', and it needs all our energy to do so. ME/CFS is a persisting, long-lasting illness, and it remains the case that minimising exertion is the key to any degree of recovery.

    It is the brave GP who will try prescribing rest and the avoidance of visits to the doctor, but the next time you see somone who fits the description, try it. You may be delighted to find that, not only this is a pretty inexpensive treatment pathway, your patient actually gets better!

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  • Thank-you Nancy Blake, yours is virtually the only advice that makes sense, not particularly in my experience as a nurse in general practice since 1999, but as a mother of a young woman who developed what can only be described as ME in 2001 when she was age 16.

    I am particularly alarmed at the poor education aimed at GPs on this subject and the misguided NICE Guidelines based on the extremely protected PACE trial.

    In training, we are taught not to place all our eggs in one basket reading research, yet somehow Oxford University have consistently refused to release information on how they arrived at their results from PACE.

    I cannot read the premium module issued this week on managing ME or CFS based on "latest evidence", but I hope anyone reading this with a modicum of conscience does not always have faith that NICE give the best advice. I have written to NICE and explained that the WHO categorise ME/CFS as a neurological illness, yet PULSE I note have put their module under mental health.

    There is a lot of evidence now to show links between immunity, neurological, gastrology systems. As I write Oxford University are being taken to Higher Tribunal to be forced to release this very damaging and unhelpful study and other countries are ridiculing it.

    Can't produce all the references here, but after observing and living with an ambitious and intelligent and educated daughter striving to live a life in the moments of normality she gets, her GP has little clue of her plight because there is nothing he can access and nothing he can do.

    Sadly, we lost tribunal for PIP last week because the "expert" GP appeared to only be interested in why she wasn't taking more than 10mg Citalopram and the disability "expert" had obviously quickly updated via NICE Guidelines and judged on my daughter not accessing PACE trial support.

    There are going to be a lot of red faces soon, to those who think ME/CFS is a lifestyle choice, or those who work in medicine on the basis of if there is no test it is all in mind.

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  • I try not to diagnose ME. I think the label has a negative impact on the patient as there is little if any treatment to access. I prefer to tell patients that all the tests are negative and with a bit of luck they should recover soon. The diagnosis of a chronic long term condition should not be inflicted on a patient without some firm evidence for the existence of the condition in the first place. With all the advanced diagnostic tools we have at our disposal these days as every year passes the the existence of diseases like this becomes more and more unlikely. We can't diagnose everything and where we can't it's best to say so - not to come up with a totally unhelpful label. I have never created/diagnosed a patient with CFS but I have seen lots of patients diagnosed by others and have not been helped. You only have to look at the long list of supposed treatments to realise we do not know what we are doing. If your car breaks down and the mechanic suggests 10 completely different solutions you would probably assume that the mechanic did not know for sure what was wrong with the car.

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