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Rhys Davies: Chronic frustrating syndrome

24 Apr, 13 | by BMJ

A wise man once said that he knew nothing at all except that he knew that he knew nothing at all. Socrates would have made a good medical student.

Chronic Fatigue Syndrome (CFS) is characterised by overwhelming fatigue, post-exertional malaise, cognitive symptoms, sleep disturbances, and a vague constellation of muscle and joint aches. It is a frustrating disease, for doctors, for patients, and for medical students.

When I have brought up the topic with other medical students, some otherwise bright students have laughed and claimed it isn’t really a disease. Having met patients with CFS, I am convinced their illness is real enough. NICE guidelines from 2007 indicate that the symptoms patients experience can be as debilitating as those of multiple sclerosis, rheumatoid arthritis, or congestive heart failure. There is nothing factitious about the level of disability some patients with CFS have to endure.

But what is it? Unsure mumblings about viruses and co-incidence with depression don’t really cut it. I would dearly like to be educated about it, but what can my lecturers tell me? Theories and mechanisms are slowly being tested and teased out, about low cortisol levels, and disordered body rhythms, but we are still just finding the corner pieces of the jigsaw.

The result of this curricular void is that students knowing nothing about CFS become doctors ignorant of it. This ignorance breeds frustration, at a lack of knowledge, a lack of diagnostic tests to run, and a lack of treatments to provide. Graded exercise therapy is often lauded, but trials only describe it as moderately effective, and it is not a panacea for all patients. Cognitive behavioural therapy can also help, insofar as patients with any chronic illness can benefit from it.

The result of frustrated doctors is frustrated patients. CFS is a diagnosis of exclusion, which makes for a very poor label. It is admitting that we don’t know what it is, only what it is not, leaving patients to wrestle with an unknown disease and an uncertain prognosis. The return of normal test results does not bring relief. The patient knows that something is not right, so why can’t the doctor find it?

And what about the doctor with the normal test results in their hand? There is nothing they can find with a name on it, yet the patient still complains of pains, and aches, and fatigue on top of everything. The extreme, but easily imaginable end of this spectrum is that doctors will see these patients as a nuisance, chronic malingerers that gobble up clinic time.

A 2012 review suggests the exact opposite approach is needed, that “the care of people with CFS encompasses the essence of being a clinician—listening, interpreting, explaining, guiding, and supporting people through their personal journey of illness.” The challenge of CFS is to be a good doctor without the modern comforts of test and treatments. As Margaret McCartney puts it in a recent student BMJ article, “just because we may have no pill to give a cure, or no easy operative solution, we can still offer human kindness to our patients, listening, empathy, and a commitment to care for them.”

For what its worth, I remain frustrated and fascinated by CFS. I’ve got more hope of understanding quantum mechanics, and I usually give up with that when they start putting cats into boxes. However, for the medical student, CFS poses the challenge of understanding disease as more than diagnosis, prognosis, and management. Where is Oliver Sacks when you need him?

I wish I had something more substantial to put in this post. Isn’t that frustrating?

Rhys Davies is a fifth year medical student at Imperial College London.

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  • http://www.facebook.com/clair.coult Clair Louise Coult

    The problem with CFS is that it’s a bucket. You get a patient with vague symptoms of fatigue, malaise and pain, you run the usual tests which are all normal so what can you do with them? You put them in the CFS bucket along with all the other patients with the same vague symptoms. This is neither helpful to physician or patient. It’s nothing more than a name and once you’re labelled with it all testing and investigations stop. I was diagnosed with ME 23 years ago. I never really felt the diagnosis fitted but doctors assured me that was what I had and they couldn’t do anything to help. They were wrong. I actually have Joint Hypermobility Syndrome (Ehlers Danlos Hypermobility Type) and Postural Orthostatic Tachycardia syndrome. I was only diagnosed last year because I pushed to see the right doctors through my own research. My GP wanted me to give up looking for answers as she believed I would never find them, but as soon as the right doctors and nurses started doing the right tests, the cause of my symptoms was obvious. A number of doctors had previously noted my hypermobility but dismissed it as benign or an incidental finding. No-one ever took my blood pressure standing up or noticed how my pulse raced upon standing. I actually had to point out to a hospital consultant that a pulse increase of 32 bpm upon standing was NOT normal! I believe Dr Newton’s CFS clinic in Newcastle found that around 40% of people referred to her didn’t actually have ME/CFS, so that raises the question, how can you find out what it is if 40% of the people diagnosed with it actually have something else? It’s impossible! But what is possible is making sure people have an accurate diagnosis rather than just throwing people in the CFS bucket because initial testing is normal.

  • tomkindlon

    Thanks for your interest. Frustration is certainly a valid response.

    However, it may be premature to conclude the illness can’t be better understood. The reality is that relatively little biomedical research has been done into researching it. For example, before the MRC announced some funding at the end of 2011, it’d hadn’t funded any biomedical research into the condition (except for a small study looking at the HPA axis).

    In the past, the people promoting the cognitive behaviour therapy (CBT)/graded exercise therapy (GET)/rehab model for the illness had a lot of influence, particularly in the UK. And it wasn’t clear if they had much drive to research the pathophysiology. An example of this can be seen in the report, “Chronic fatigue syndrome; Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners” (1) which downplays the value of future biomedical research. The approach was that the condition could effectively be treated with rehabilitative approachs such as GET and CBT based around scheduling increased activity.

    Hopefully the poor results in objective measures (e.g. six minute walking test, work absence) for rehabilitative approaches in the £5m PACE Trial (2,3), along with poor results in another major trial, the FINE Trial (4), and in assessments of services offering such approaches (5,6), will help focus minds that such approaches are far from sufficient.

    References:

    (1) Royal Colleges of Physicians, Psychiatrists and General Practitioners (1996). Chronic fatigue syndrome; Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. London, UK: Royal College of Physicians of London. ISBN 1-86016-046-8.

    (2) McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD. Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS One. 2012;7(8):e40808. doi: 10.1371/journal.pone.0040808. Epub 2012 Aug 1.

    (3) White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O’Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M; PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. 2011 Mar 5;377(9768):823-36. doi: 10.1016/S0140-6736(11)60096-2. Epub 2011 Feb 18.

    (4) Wearden AJ, Dowrick C, Chew-Graham C, Bentall RP, Morriss RK, Peters S, Riste L, Richardson G, Lovell K, Dunn G; Fatigue Intervention by Nurses Evaluation (FINE) trial writing group and the FINE trial group. Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial. BMJ. 2010 Apr 23;340:c1777. doi: 10.1136/bmj.c1777.

    (5) Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM. 2013 Mar 28. [Epub ahead of print]

    (6) Rapport d’évaluation (2002-2004) portant sur l’exécution des conventions de rééducation entre le Comité de l’assurance soins de santé (INAMI) et les Centres de référence pour le Syndrome de fatigue chronique (SFC). 2006. http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf.

  • swimmysam

    As someone who has had a disagnosis of ME/CFS for 18 years I have seen good and bad
    doctors. The difference? The good ones bother to actually listen to what
    I say, believe me and then try to find ways to treat my symptoms.

    One excellent GP used to opine that most doctors had forgotten that
    medicine is an art as well as a science and that made all the
    difference.

  • Ash

    Thank you for writing this blog. It’s good to know that there are (potential) doctors who are open to learning about the condition. I would make the following points, though, if I may:

    CFS and ME are too often conflated. CFS is a diagnostic perversion of ME, a neurological condition. Someone with ME can be said to have CFS, but someone diagnosed with CFS does not necessarily have ME. CFS is an umbrella term which doesn’t refer to a particular pathology or specific illness and, as you say, is (mis)diagnosed by exclusion.

    ME, however, can be diagnosed with objective tests (http://www.hfme.org/metests.htm), but they are rarely offered to patients in the UK. CFS and ME are not synonymous, despite being treated as such. As long as they are considered the same condition, patients given the limbo diagnosis of CFS will continue to receive inadequate treatment.

  • http://twitter.com/BonBonCharlot Sue Nutt

    At least you are open-minded, and trying to understand this
    illness. Mine was preceded by Coxsackie B virus (shown in blood tests taken over about 6-9 months) 26 years’ ago. I took 9 months off work (lost the use of my legs, speech, left side of my face ‘dropped’ – symptoms I still experience at certain times), then went back to work 2 hours a day, until I worked full-time. I later studied and practised law as a F.ILEX, all within the confines of this invisible illness, that left me as sick as the colleague who had M.S. The M.E. Association has a purple booklet that explains a lot, and I am sure they would be happy to let you have a copy. There is SO much research out there, it is amazing most doctors do not believe it is a real illness – in fact, I have never come across one G.P. that believes it is so. There is some latest research that shows there is a problem with the cells, meaning they are less able to cope with exertion, and somewhere, at some stage, I copied down about 60 pieces of research showing other problems (although I cannot find any of it at the moment).t. A big thanks to you for taking it seriously
    everyone else when the penny finally does drop.

  • http://twitter.com/bossypigeon Julia

    Rhys, your blog gives me hope for the new generation of doctors. You have a better understanding already than many more experienced clinicians, and your open minded interest and thirst to learn will take you far in helping people with what can be one of the cruellest, most life-destroying diseases there is.
    I hope you go on to influence many others in the profession and beyond.

  • http://www.facebook.com/profile.php?id=715745151 Anna Wood

    HI Rhys

    Thanks so much for your thoughtful blog post – ME/CFS is indeed very frustrating for patients and for doctors. However, there is perhaps more information out there than you realise -although admittedly it is far from being a full description of the illness. Rather than try to summarise all the findings, if you or others are interested you may find Cort Johnson’s blog http://www.cortjohnson.org/ useful -as he brings together up to date research (often from outside the ME/CFS field) and draws out its significance. He also discusses treatments that have shown promise (at least for some) and potential biomarkers – all of which should provide hope for both patients and doctors, as well as an indication of where more research effort is needed.

  • Shelster6

    Thank you for being a future advocate of CFS patients and, indeed, all patients with undiagnosed illnesses. My experience (with some exceptions) has been that if a doctor can’t diagnose me, it must be depression. The result has been more than 20 years of increasing debility – I now can barely work part-time. I just want some answers to this hellish condition so I can get my life back. Please don’t give up on us; we need more doctors like you.

  • http://www.facebook.com/jay.ne.946 Jayne Wils

    Thank you for thinking about us and writing this, it was lovely to read that someone out there cares and has compassion – something that seems to be missing from most Doctors (maybe people as a whole, as there seems to be very little understanding) out there when regarding CFS :)

  • TCP1960

    Thanks for your post and your concern and frustration. Can you imagine what it is like having this illness and very little help and often derision from the medical profession? I have been ill since 1984 after glandular fever and surgery. My life was never the same after that and it took 8 years to get any diagnosis. I have felt awful, not just fatigue, but in severe pain all over in joints, nerves and muscles. It has affected every part of my body and in the last 7 years I have developed peripheral and autonomic neuropathy. That too is hard for doctors to understand and treat. I’m drugged up with nerve pain blockers that do very little even at the high doses and I face nausea, IBS, twitching/jerking, cognitive impairment as well as the effect it all has on my liver, BP and heart etc. I now have OSA, too. The list gets longer each year and my life is permanently on-hold. I look forward to the day when it finally gets resolved and everyone knows what it going on. Thanks again :)

  • http://twitter.com/augustine_ryan Gus

    Listening is, unfortunately, a basic skill that has been missing from this field for many a year. A major problem with ‘CFS’ is the merging of many patients with, very possibly, a number of other misdiagnosed or undiagnosed conditions under the term of “Chronic Fatigue Syndrome”; as you’ve said, diagnosis is often made by process of elimination – not by actual, tangible, positive findings in individuals.

    This has led (in my humble…) to the dominance of psychological explanations in any ‘debate’ regarding this diagnosis – if a physical cause cannot be found it must be psychological.

    Even as a non-scientist I’m quite confident in saying that we don’t know everything about the human body therefore it’s not unreasonable to assume that it might be a bit premature to claim that ‘CFS’ is psychological, aside from any debate about the rather muddied group that ‘CFS’ has become.

    The term “Myalgic Encephalomyelitis” came from “Benign Myalgic Encephalomyelitis”, coined in the mid-1950s. Personally I feel we’ve moved damagingly away from this (resulting in ‘CFS’) and I would very much welcome some verisimilitude and less rewriting of history. I’m not necessarily calling for the name ‘ME’ (certainly not calling for ‘CFS’) but maybe doctors who were in the thick of things when ‘BME’ became apparent pushed the panic button for a good reason – not the (IMHO) “mass hysteria” that Beard and McEvedy claimed in 1970.

  • http://www.facebook.com/kartadharma Karta Kaur

    Thank you for this blog,hope the doctors of the future will be more aware of ME/CFS, blogs like yours help to raise awareness … I have been suffering for (only) 6 interminable years, saw a raft of perplexed doctors and finally, 4 years ago, one of them handed me a post-it note with scribbled “myalgic encephalomyelitis” and to look it up on the internet.That was my diagnosis – I had never even heard of the condition before! When I went back to him asking for help – he said there was none … I did my own research at home and found the NICE guidelines – it took me another year of visiting various GPs to get a referral to a NHS CFS unit though….

  • http://www.facebook.com/msouza.swester Matt N Susan Souza

    I myself suffer from CFS and FMS. I can tell you from a patient stand point , nothing is worse than not being believed . Depression, isolation, etc…, Then we go with the undertreated chronic pain patient. Wow. Case by case we get lumped into drug addict opiate seeking users. There is a saying in CFS and FMS community. “You don’t get FM/CFS until you actually ‘get it;’ ‘. I wonder how many Drs, Nurses practitioners have these disorders? Those doctors and caregivers are the ones I as a patient would benefit from . Thank You for your open mindedness. Please continue to educate the ignorant. Bless you.

  • Linda Vansteenwinckel

    Great read. You’re a badly needed voice from the core of medicine, Rhys Davies. Chapeau.

    Over the course of my 35 years of illness (diagnosed as
    CFS about 20 years ago, when the diagnosis became more widely known) I’ve met some amazingly good doctors. People like you, with inquisitive minds, not held back by preconceived ideas about my illness, but with just the right amount of frustration to make them look further. They were committed to help and practicing their
    medical art and skills on largely unknown terrain with grand finesse. I am very grateful to these doctors (not in the least because they helped me preserve my human dignity).

    For now, in the absence of more definitive answers (the recent shift to biomedical research already shows some emerging subgroups, potential biomarkers, etc…but it will take time before this translates into science applicable by clinicians, in the form of tests and treatments) there’s a lot doctors CAN do to help relieve symptoms. Yours is not the only cry for more medical professionals’ education. Some initiatives have recently tried to aggregate already available knowledge about symptomatic treatment in CFS. An example is this recent document : “Chronic fatigue syndrome/myalgic encephalomyelitis. A primer for clinical practitioners.” http://guideline.gov/content.aspx?id=38316

  • Anita

    I have been living with CFS for ten years now. Since being diagnosed seven years ago it is only spoken about between my GP and I if I mention it. After diagnosis you are just left to get on with it. I am a fulltime working mum and housewife !!!!!!!!! I just have to get on with it. It is an invisible illness that leaves you lonely and frustrated !!!!!!!!!!!

  • silverysea

    Aren’t you wonderful? To so thoughtfully think around a situation, and consider a possibility that isn’t the one just put in front of you.
    Everything about your article tells me you have actually looked at the patients, and seen their humanity along with their suffering. That will mean so much – being ill, and then being maligned and/or misrepresented, is a terrible burden to have to endure.
    Your patients are going to be so lucky to have you as their doctor, whatever their reason for going to see you.

  • http://www.facebook.com/ronsummerill Ronald Summerill

    Rhys– has any doctor ever questioned wether the correct tests were performed in the first instance. Why aren’t Mitrochondrial function tests and an adrenal stress profile done on all CFS patients. The Mitrochondrial test would show ATP levels on exercise and then regeneration, cell degradation which I itself is deemed to be a test that would diagnose the condition.
    The Adrenal stress profile would show cortisol levels and wether there was adrenal fatigue adding to the condition. The NHS thesis that a patient has normal adrenal function and then goes straight to failure (Addison’s) is just crasse. It just does not work like that, you have a process from normal to failure. I had both tests done and they highlighted my illness for the first time, I use ATP very quickly on exertion but regenerate slowly, my magnesium cell levels are low, cell degradation was very high 16.9 and my vit B3 levels were low end of normal. Oxidation issues on chromosome 21 and 16 so poor gene expression.
    Adrenal stress profile showed very low levels of cortisol which lab thought may be because of HPA dysfunction as my cortisol sorted at midnight.

  • Spamlet

    A thoughtful piece Rhys: you should go on to make a fine GP!

    I think there are a couple of key assumptions in the system that make it doomed to fail many patients, and their GPs.

    The first, is that any single practitioner can, in a short interview, diagnose any complex illness, even those that are newly emerging, or know, immediately, what tests are necessary to arrive at a diagnosis. Why is this crazy assumption allowed to be the foundation on which the whole of the rest of the NHS is built?

    The second runs on from the first. You say: “The return of normal test results does not bring relief.”. Well, this presupposes that it was known what tests were needed in the first place (Someone recently posted an order form for exclusionary tests, from a US lab, that went into several dozen parameters; and that did not include physical tests!). Then, when you have your results, what is your next step? That’s right: there in nowhere in the NHS to refer patients on, for detailed analysis, despite the fact that there are a number of university and other research establishments with the equipment to carry out such work.

    I can’t see any way that progress can be made on this, until responsibility for difficult cases is taken out of the hands of the GP, thus freeing him up to help those he *is* equipped to deal with.

    A ‘diagnosis’ of ME, CFS, or whatever, is almost worse than useless: whatever criteria spectrum was chosen to establish it, this is not a diagnosis, but a dead end, and, for many, a life sentence. Though it will upset many who cling to the names, we need a system that does not come to a dead stop with the issuing of a label! Better, no label: treat everyone as an individual, with a unique case number, until it is proved they are part of a wider group: for generations we have been fruitlessly trying to do the opposite of what is needed.

    So, my recipe for progress on this and all non-obvious illness, is to set up regional, purpose built, multidisciplinary diagnostic centres, with state of the art equipment, and highly trained *scientific* staff. It may sound like asking a lot, when even the limited facilities of A&E departments are being denied to whole communities, that in earlier days, with much lower populations, would have had access to several (!), but, seriously, expecting a single GP to solve a case of ME etc. is like expecting a single weatherman to solve climate change! How many such centres could already have been set up with the money showered on Atos for the purpose of harassing the defenceless rather than helping them back to health?

    To do the job: first give us the tools; and keep them sharp. It is no fault of GPs that, on detailed diagnosis, the NHS is both unscientific and unfit for purpose.

  • leelaplay

    Your curiosity is refreshing Rhys. Sounds like you have the makings of a good doctor. Unfortunately, not only did the MRC not fund biomedical research in the UK, the SMC did not get the media publishing anything on the over 5,000 biomedical research papers. Fortunately, there is a very quick way to have more substantial info – look at these summaries of current research and their references: The Canadian Consensus Criteria is what many of the good researchers these days use when selecting their cohorts, and what most good diagnosticians use. No depressed or
    tired people are included. The paper (2003) is here
    http://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf and the Overview (2005) is here http://www.mefmaction.com/images/stories/Overviews/Canadian_ME_Overview_A4.pdf
    . This was then updated by many of the foremost international researchers and practitioners. Here is the paper (2011) http://www.co-cure.org/MEICC.pdf and
    here is the Primer (2012)http://www.hetalternatief.org

  • http://twitter.com/MildlyMedicated Carrie

    Wonderful write up! I have a few chronic illnesses so in my case I believe the CFS is a second order issue. I believe some people in the medical field are a bit turned off by illnesses that can only be managed. I am thankful to see your desire to understand the patient illness connection, treating the person and not the condition means a lot to those who are chronically ill.

  • http://www.facebook.com/annabel.schleutker Annabel Schleutker

    Thank you Rhys for showing compassion, thoughtfulness and an open minded attitude. I’m 41 and have had m.e now for 15 years. The last 9 years severely. I’ve been too ill to leave my home for three years now, currently bedridden. This illness devastates lives and yet there is a woeful lack of training for doctors in this disease and much ignorance as to its nature, causing further distress to patients who find their suffering trivialised and misunderstood. The psychs support a flawed behavioural model of m.e and it is this view that is prevalent amongst the medical professional. However, there is much science to support the bio medical view of m.e yet it is a battle to get the science disseminated amongst the medical profession. Those of us with m.e are left without treatment, isolated and with very little help.

    Invest in m.e hold a wonderful annual conference in London bringing together bio medical researchers from around the world to discuss their work in studying this disease. Should you be interested the conference this year is on 31 st May in central London.

  • http://twitter.com/ollie72 Ollie Cornes

    I’m a patient and I think even without an understanding of the disease there’s a lot doctors can do, beyond general support. For example patients often have symptoms that can be effectively managed, e.g. POTS, sleep problems, pain and so forth. I think there’s also great value in making sure nothing else gets missed (MS, cancers, heart disease, etc), and keeping ME patients in the system (many avoid doctors due to bad experiences and that’s no good for anyone). Frankly, the value of having a doctor tell you he understands how sick you are but there’s not much he can do cannot be understated. Rhys, I greatly appreciate your interest and sensitivity to the needs of ME patients. I wish there were more doctors in the NHS curious about and sympathetic to this life-changing disease.

  • Kat

    I enjoyed reading your article regarding CFS. I spent 5 years being treated as a waste of time by many drs who would tell me my symptoms were due to laziness or being fat…..even after losing weight and I’m not even fat.
    multiple blood tests and hospital stays for other tests and finally I have an answer.
    from suffering cfs for 5years and discovering that I have active Epstein Barr virus I soon developed IBS/ food sensitivity after 2 years of th disease.

  • Bunny Silversmith

    Lovely post!! Thank you so much! I’ve been suffering with a severe case of CFS and fibro for the last 19 years. I think the real issue is that there is not enough money going into real research for this illness, which means the docs have no protocols to give to patients. We can’t know much about disease until it is studied properly. Not long ago, MS was called “faker’s disease” and before the billions of $ put into cancer research, there wasn’t a heck of alot to do for them. Really wonderful to read such a thoughtful and intelligent post from a young doc coming up in this world. I’m American and even though it is considered a physical real illness here, I’ve had a heck of a time finding docs that get it. I have had one amazing doc though. Good luck to you, my friend. I send you my best wishes and I think you will make an excellent physician.

  • http://www.tanyamarlow.com/ Tanya Marlow

    Thanks for this. For my part, I wish that doctors realised the power that they have. There are doctors who confidently opine of their theory of the origins of CFS and how it is all mind and body together – and really they have no more knowledge on the subject than the average person down the pub. But the power that those opinions have differ – the person down the pub will not restrict your treatment, will not cause you to worsen your illness and perhaps cause irreparable damage. The wrong words from a doctor can cause years of harm – just because they spoke so confidently from a place of almost complete ignorance.

    I wish I could go back to the doctors who told me not to rest too much, and explain that the cardinal symptom of ME is a bad reaction to exercise – that all the ME charities are agreed and the best doctors prescribe rest in the early stages. I wish I could say to them that I trusted them, and did what they said, and it made me worse, not better – and that it was not my fault, as they kept intimidating, that I did indeed want to get better, and each time that Graded Exercise or pushing beyond my limits sent me crashing, I still came back because I had nowhere else to go, and I trusted doctors.

    I don’t trust doctors any more.

  • Alan

    As the father of someone who has had ME/CFS for 7 years now, I felt very dispondant after reading this article. Whilst I can almost accept that current GP,s know little about the disease, I was hopeful that the next batch coming through would be much better informed.
    It should be a high priority to get this disease and all that we currently know about it into the training package of all prospective medical related students.
    yours disappointed and frustrated

  • http://twitter.com/Donnalovesummer Donna

    I have been bedbound since Christmas and ill for 18 months before that. My GP is happy to have social services arrange carers to help me wash and prepare meals for me but unable to offer any helpful treatment or advice apart from to tell me that I know more about this illness than she does. I researched and asked to be referred to a CFS clinic which she didn’t know existed. I hope from your post that there will now be a new generation of Dr’s who will take this devastating illness more seriously. Your post gave me hope.

  • Justin Reilly

    Btw there are several good overviews of the disease, particularly the 2003 ME/CFS Canadian Consensus Criteria and 2011 ME International Consensus Criteria. very much hope you get a chance to look over one of these!

  • Init

    Thank you for this – it means a lot and I hope you will become a BIG positive name in CFS/ME in the not to distant future – May 12th is Annual CFS/ME Awareness Day so please continue to spread the support if you can!

  • phoebesnowden

    I’m glad that the new generation of physicians is questioning the status quo in the UK, but want to chime in with the others that there is already a body of research detailing replicable biomarkers that is being ignored. I’d also like to point out that after 20 years with a CFS diagnosis (the original, acute viral onset, Holmes diagnosed CFS, aka ME) I still have active, chronic quantifiable infections. Infectious Disease doctors tell me that my tests must be wrong because I “would be dead by now”. Yet I am alive, just very disabled. Instead of refusing to test patients for chronic infection, denying tests with positive results, and relegating CFS patients to the psychiatric pile, we need more physicians to replicate established biomarkers. Many of these tests can be done at commercial labs. The evidence is already there, it just needs to replicated and accepted. This seems to be what Ian Lipkin is doing, and it is my hope that others follow suit.

  • Bunny Silversmith

    Thank you so much for noticing us patients and writing this. It’s heartwarming to hear of a young doc coming up in the world who will be as observant and kind as you. I’ve been severely ill for 19 years with CFS/ME and fibro. I lost my career, ability to earn income and to have a normal life. This disease is hardcore at times. I had a friend who had stage 4 breast cancer, she was on chemo and radiation treatment and she told me she had never felt nearly as sick as I did everyday. I don’t mean to tell my sob story, just want others to know how severe it really is. Thanks again, really makes me happy to read this. Best of luck with your life!

  • Zag

    Rhys, I would like to reiterate other people’s gratitude for such an open-minded, inquisitive and compassionate attitude towards a widely mis-understood illness. It is a refreshing and welcome sight, to see such an article from a clinician.

    In the comments, Ollie Cornes’ comment cannot be emphasised enough, when he says “the value of having a doctor tell you he understands how sick you are but there’s not much he can do cannot be understated.”

    This has been my own experience. I value my doctor who has admitted that she cannot help me, but who displays interest and compassion. When I visit her, I feel like I am being treated as a valued human being, and that I have not been undermined or invalidated in any way.

    If a doctor can do nothing else, then at least she/he should be able to listen, with compassionate concern, and to provide information and care. This makes an immeasurable difference to patients’ lives, especially when they are going through a period of intense distress.

    And I thoroughly concur with Gus (in the comments), when he says that “Listening is, unfortunately, a basic skill that has been missing from this field for many a year.”

    If only patients had been more thoroughly listened to (and ‘heard’), by the UK’s mainstream medical profession over the years, the illness would be much better understood, and scientific research would not have ended up in the unfortunate research cul-de-sac that it did a few years ago. (The only funding resources available in the UK were going towards misguided psychiatric efforts, which culminated in the unfortunate and unwanted PACE Trial, which showed us what patients already knew – that CBT & GET are not cures, and offer very limited help to a very limited proportion of patients. The trial showed that CBT & GET do not get people back to work, and have no, or very little, effect on objectively measured physical disability.)

    Also in the above comments, Annabel Schleutker mentions the Invest in ME annual conference. This conference can be a fascinating introduction into a little-known illness, with researchers at the cutting edge of various fields presenting intriguing research, including immunological, genetic, epidemiology, and clinical research.

    The next Invest in ME conference is on 31st May, and they very much welcome medical students, and clinicians:
    http://www.investinme.org/IiME%20Conference%202013/IIMEC8%20Home.html

    The latest biomedical research into CFS/ME shows abnormalities in immune cell function, such as NK cells. I haven’t got all the details to hand, but there is a growing body of replicated evidence. It now needs reliable replication, in high powered research.

    Also, there has been some promising success with treatment with Rituximab, in Norway. We are waiting for the results to be replicated on a larger scale, but patients are having to crowd-source the funding, as the Norwegian government have not provided the funding that the researchers had expected them to.

    Further info on the Norwegian Rituximab research:
    http://discovermagazine.com/2013/may/01-are-b-cells-to-blame-for-chronic-fatigue-syndrome#.UX_JSrWsjTo

  • Jeanne Morris

    Doctors use to think menstral cramps were all in their heads too! Just ask a female med student if they belive in cramps. CFS is real and it’s never relenting. At least cramps only come once a month.

  • Elizabeth

    Hello – thank you for your understanding words about CFS/ME. I’ve had this illness since 1993, so this is my 20th “sickiversary” (just made that up…I think). I started with a bout of herpangina. At the time I had that illness I was also under great stress and working in a factory around many airborne chemicals. I have always believed this is not a simple cause and effect illness but one where the patient has a particular tendency to it and a set of stressful (physically, medically and psychological stress would all be valid) circumstances lead to an awakening of a sort of whatever causes this. I believe it to be mitochondrial, but that is only conjecture. I know for certain that it ebbs and flows, as I have had some remissions in my years and some times I simply cannot function past basic living. Generally the cycle for me runs in about 3-4 yr runs, but even within them there are times I am up for a month and then back down harder or down for a month and back up for longer. Possibly that is because when we feel good we try to live all of life at once and we tend to burn out. It’s a human thing to do and we are, after all, only human. As for what you and your fellows can do for us; I have some humble suggestions borne of years of experience.
    1. Believe us.
    2. Take great office notes, even if we repeat ourselves each time. Changes are we will need them eventually for SSDI. This will help you, too when the time comes.
    3. Go ahead and take blood tests when it warrants but don’t be frustrated when they come out normal. We’re frustrated enough for you and for us. We need you to do something else….
    4. Ask us what will most help us! I’ve had many wonderful physicians try many new drugs, suggest exercise, weight loss, more thyroid meds, a psychiatrist and any specialist you can think of. I’ve had MRI, CT scans, nerve testing, etc, etc, etc. The best clinician I have had in the past 20 yrs was the DO who first diagnosed me with post viral fatigue syndrome. She was honest and said “We don’t know what to do for this, so how can I help you feel the best you can right now?” And when I said, “I can manage if I can just deeply rest and relax a bit a few times a week” (because at that point, it was true) She sent me to physical therapy but called the therapist and said to just give me whatever I needed. Massage, Reiki, What is now called theraputic touch. I functioned with 3 of these treatments a week for years with hardly any meds and then I lost my insurance and things got very bad. Then I could not use that DO and no doc since has allowed me to simply have this kind of treatment.

    They all want to FIX me, not heal me.
    Fixing me has not helped. I had dr after dr tell me if I lost weight I’d be all better. Finally I got so frustrated I had bariatric surgery and dropped 118 lbs in 8 months. Believe me when I tell you that in the year since I have never been as ill as I am now. I not only fell deep into fatigue, I also ended up with a tremor and post bariatric post prandial hypoglycemia. But hey, I wear a smaller size. I think you see my point.
    So, dear future physician – Heal us, don’t try to Fix us!
    thank you for your time.

  • Elizabeth

    Hello – thank you for your understanding words about CFS/ME. I’ve had this
    illness since 1993, so this is my 20th “sickiversary” (just made that
    up…I think). I started with a bout of herpangina. At the time I had that
    illness I was also under great stress and working in a factory around many
    airborne chemicals. I have always believed this is not a simple cause and
    effect illness but one where the patient has a particular tendency to it and a
    set of stressful (physically, medically and psychological stress would all be
    valid) circumstances lead to an awakening of a sort of whatever causes this. I
    believe it to be mitochondrial, but that is only conjecture. I know for certain
    that it ebbs and flows, as I have had some remissions in my years and some
    times I simply cannot function past basic living. Generally the cycle for me
    runs in about 3-4 yr runs, but even within them there are times I am up for a
    month and then back down harder or down for a month and back up for longer.
    Possibly that is because when we feel good we try to live all of life at once
    and we tend to burn out. It’s a human thing to do and we are, after all, only
    human. As for what you and your fellows can do for us; I have some humble
    suggestions borne of years of experience.

    1. Believe us.

    2. Take great office notes, even if we repeat ourselves each time. Changes
    are we will need them eventually for SSDI. This will help you, too when the
    time comes.

    3. Go ahead and take blood tests when it warrants but don’t be frustrated
    when they come out normal. We’re frustrated enough for you and for us. We need
    you to do something else….

    4. Ask us what will most help us! I’ve had many wonderful physicians try
    many new drugs, suggest exercise, weight loss, more thyroid meds, a
    psychiatrist and any specialist you can think of. I’ve had MRI, CT scans, nerve
    testing, etc, etc, etc. The best clinician I have had in the past 20 yrs was
    the DO who first diagnosed me with post viral fatigue syndrome. She was honest
    and said “We don’t know what to do for this, so how can I help you feel
    the best you can right now?” And when I said, “I can manage if I can
    just deeply rest and relax a bit a few times a week” (because at that
    point, it was true) She sent me to physical therapy but called the therapist
    and said to just give me whatever I needed. Massage, Reiki, What is now called
    theraputic touch. I functioned with 3 of these treatments a week for years with
    hardly any meds and then I lost my insurance and things got very bad. Then I
    could not use that DO and no doc since has allowed me to simply have this kind
    of treatment.

    They all want to FIX me, not heal me.

    Fixing me has not helped. I had dr after dr tell me if I lost weight I’d be
    all better. Finally I got so frustrated I had bariatric surgery and dropped 118
    lbs in 8 months. Believe me when I tell you that in the year since I have never
    been as ill as I am now. I not only fell deep into fatigue, I also ended up
    with a tremor and post bariatric post prandial hypoglycemia. But hey, I wear a
    smaller size. I think you see my point.

    So, dear future physician – Heal us, don’t try to Fix us!

    thank you for your time.

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