The Importance of Names

The illness I have is known by many names: Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Low Natural Killer Cell Disease and Post Viral Fatigue Syndrome (PVFS) to name but a few. In the UK, the terms ME and CFS are widely considered synonymous while in the United States the term ME is rarely used at all.

It is often said that a rose by any other name would smell as sweet, so when I first heard of a campaign to abolish the term CFS I assumed this was simply dislike of the word ‘fatigue’ which is by no means the predominant symptom of ME. Although I disliked the name CFS as much as anyone I couldn’t help but wonder if it really mattered; surely my symptoms would remain the same regardless what name they were given. The more I learn about the issue however, the more convinced I become that names really are important.

In 1969, Myalgic Encephalomyelitis was formally recognised by the World Health Organisation (WHO) as a neurological disease. The diagnostic criteria required certain neurological features and specifically excluded psychiatric explanations for a patients symptoms. At the time, research carried out by prominent physicians in the field was highly regarded.

In 1970, McEvedy and Beard published articles in the British Medical Journal dismissing outbreaks of ME as mass hysteria due to the predominance of female patients; the same argument once used to dismiss Multiple Sclerosis. Ignoring physical abnormalities found in more than two hundred patients at the Royal Free Hospital, they planted the first seed of doubt in the minds of some clinicians.

The name ME was used throughout the commonwealth, but the illness remained unnamed in the States until 1988 when a cluster of outbreaks and subsequent insurance claims prompted the Centers for Disease Control to introduce the name Chronic Fatigue Syndrome. Three ME specialists present at the meeting refused to sign the new working case definition with its focus on fatigue as it bore so little resemblance to neurological ME. The new name was a gift to medical-insurance companies as it implied the illness was nothing more than perpetual tiredness, a symptom so vague that insurance claims could be easily denied.

Since the 1990s the name CFS has gradually superseded ME in the UK. Many doctors reject the term Encephalomyelitis (meaning inflammation of the brain/spinal cord) even though evidence of such inflammation has been found in patients with ME.

In 2001 it was discovered that CFS/ME had been wrongly reclassified as psychiatric in a UK adaptation of a WHO publication regarding mental health disorders. Despite confirmation from the WHO that this was a mistake, the NICE guidelines continue to offer an almost entirely psychiatric approach to treating the disease.

The psychiatric lobby in the UK ignore well-documented evidence of brain lesions, reduced blood volume and cellular, immunological and cardiovascular abnormalities to insist that ME is simply deconditioning, exercise avoidance and false illness beliefs. Specialist testing (SPECT scans, mitochondrial analysis and tilt-table testing) to confirm physical abnormalities is rarely available on the NHS as doctors cannot justify the expense of tests that don’t lead to any subsequent treatment.

Prominent psychiatrist, Sir Simon Wessely, claims that ME can be successfully treated with Graded Exercise and Cognitive Behavioural therapies (GET/CBT). The government, while failing to fund biomedical research, has spent millions of pounds funding the PACE trials to test this theory. Full data from these trials remains unpublished despite widespread calls for its release.

The selection criteria for PACE excluded the severely affected and those with neurological symptoms but included patients with other conditions such as fibromyalgia or psychiatric disorders. This means few if any of the participants met the criteria for ME, yet the results are being treated as universally applicable. Claims of Wessely’s ‘cure’ for CFS have flooded the media when his trials at best show only moderate improvement in a small number of patients.

Measurable deterioration after even minimal exertion is one of the defining characteristics of ME, making graded exercise potentially harmful. Like many ME patients, CBT made no difference to my symptoms while graded exercise made me worse to the point that physiotherapists at my local hospital refused to treat me. Every book or article I have read of CFS patients being cured by GET or CBT described a set of symptoms and a disease process so different to my own that it was hard to reconcile them as the same disease. Put simply, CBT and GET can be very helpful for patients suffering from general fatigue states such as mental health disorders or post-illness deconditioning but if these are the cause of a patient’s fatigue they do not have ME.

Unlike ME, CFS has no internationally agreed definition. The catch-all term encompasses everything from fatal neurological disease to any persistent fatigue of undetermined origin. Definitions of CFS rarely require (and often preclude) physical or neurological abnormalities but may allow for psychiatric causes, making the terms CFS and ME mutually exclusive in such cases.

Chronic fatigue can be a symptom of almost any illness but a single normal blood test is often all that is required for a diagnosis of CFS. It is estimated that only 40-60% of CFS patients meet the criteria for ME. Following diagnosis it is rare for further tests to be carried out and patients receive little support or intervention. This is akin to diagnosing frequent headaches as Chronic Headache Syndrome with no further tests to determine if they are caused by stress, depression, migraines or a brain tumour. It is common for conditions like MS, LYMES Disease and even cancer to be misdiagnosed as CFS, sometimes with irreversable or fatal consequences.

So long as no distinction is made between the many different causes of chronic fatigue, patients around the world will be denied the proper recognition and treatments that their illnesses deserve.

So long as the ill-defined category of Chronic Fatigue Syndrome exists, patients with severe neurological disease, post-viral fatigue states and psychiatric disorders will remain grouped under the same broad umbrella and subjected to one-size-fits-all policies that are useless to some and harmful to others.

So do names really matter?

When patients with serious neurological symptoms are treated as having psychosomatic disorders and end up dying through medical neglect, forced into inappropriate treatments that make them worse, or taken from their families and placed into locked psychiatric wards, than yes, it really does matter.

So I’ll continue to refer to my illness as ME and not CFS in the hope that one day the different pathologies grouped under one vague name will finally be recognised as the disparate conditions many patients and specialists already know them to be.

Over to you:

If you have a diagnosis of ME or CFS (or know someone who does) which name do you prefer to use, and do you think it matters?
What are your own experiences of GET and CBT?
What tests were done to diagnose your condition and have you been offered further tests or treatment since diagnosis?

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27 Responses to The Importance of Names

  1. sarsrose says:

    “…dismissing outbreaks of ME as mass hysteria due to the predominance of female patients.” How primitive! It’s almost laughable!
    I have been diagnosed with CFS, I’ve never been told by a doctor that it’s interchangeable with ME, and I think that CFS is the more commonly used term here in Australia. The name does matter. So often I get asked, ‘Oh, so you just feel tired a lot?’ (Considering most people feel tired regularly, this puts me in the category of just being wimpy enough to have gotten a diagnosis.)
    No matter what they call it though, the fact is that it’s an umbrella term which covers multiple different issues that they can’t define yet and therefore can’t label.

    • I think the phrase ‘umbrella term’ is the key. When you include multiple conditions under the same name, what is helpful for one will be harmful for others. Patients will often be pressured into inappropriate treatments on the basis that it worked for someone else, whether or not that person’s symptoms (however similar) were caused by the same condition.

  2. Sally says:

    Great article! Thank you!

  3. triciaruth says:

    I completely agree that the term CFS is entirely inadequate to describe ME, Fibromyalgia and the many other conditions that fall under the CFS ‘umbrella’ as well as promoting a severe lack of understanding from others. ‘Chronic’ has lost its impact and ‘Fatigue’ is a complete understatement. I am fortunate that I don’t suffer many of the neurological symptoms of ME (although I am realising that a lot of things I have previously written off as just my body being weird – thanks to 13-years of being undiagnosed – are actually more neurological symptoms such as light sensitivity, joint pain, etc but thankfully relatively mild).

    I have found GET extremely helpful but I was supported properly in the beginning where it is all about doing less, not more. However, when there is significant neurological involvement it can do more harm than good to increase activity but keeping a GET log without trying to increase activity can be a useful tool in documenting the illness, especially when accompanied with notes on symptoms. I am starting to write a series of blogs on how GET helped me improve my stamina and general capacity for doing stuff here http://triciaruth.wordpress.com/2013/06/16/g-e-t-started/

    My diagnosis journey took 18-months (after the 13-years of being written off as lazy or hypochondriac) when I had a particularly nasty virus and PVF which threw up increased levels of my Glandular Fever antibodies as well as an abnormal thyroid function. 18-months and countless blood tests later I was finally diagnosed as hypothyroid and started on thyroxine. I actually got worse then, not better. More blood tests later, to rule-out any other physical condition that could cause fatigue, I was diagnosed as having CFS.

    I had already had some counselling sessions arranged through work as part of helping me deal with the diagnosis of hypothyroidism at the time I was diagnosed with CFS. Having the counselling was great to be able to work through my greif and anger at being diagnosed with this disease, as well as being able to say to anyone who said “oh, that’s just like being depressed, are you sure you’re not depressed and just don’t “want” to do anything?” actually, no I’m not depressed and I’ve got a head doctor to prove it.

    • Your point about properly managed GET and the idea of pulling back at first and increasing later is an extremely important one.

      Too often the physios and OTs delivering GET have no specialist knowledge of the different conditions that fall under the CFS umbrella and therefore no comprehension of how they differ from one another or from other conditions they treat. Too often patients are treated as if they were healthy people needing rehabilitation following an injury, rather than people that are still sick.

      One of my (several) experiences of GET involved physios that had never heard of ME pushing me to breaking point then accusing me of not trying when I couldn’t exceed my performance the following day. However, the physiotherapist that taught me to do the things I needed to do in ways that took less energy and put less strain on my body was utterly invaluable to me.

      The simple truth is we need more people to specialise in ME, fibromyalgia and similar conditions (whether doctors or physios) so that more appropriate help is available to those who need it.

  4. Great piece and of course loads of questions for me to ponder. I think a name does matter and of course a proper diagnosis, I long for the day when it can be diagnosed in a uniform manner worldwide. My diagnosis came about after three days in hospital where every test ruled out every other possibility, having been sick for four months at that point. I understand the thinking behind CBT and fully appreciate a persons outlook towards any illness can be improved, even if slightly, by CBT but as a cure, NO. I struggle with the GET and know some refuse to accept it as a treatment but coming from an active background where I ran miles and miles a week, did yoga, horse riding, worked full time etc to suddenly nothing when offered the chance to follow a GET program I took it. Im about a year on it and my consultant is fabulous, there is no set plan, there is no pushing, she understands the illness and understands me. I now just about manage to walk for 29 minutes on a treadmill in my home every two days, I need the day in between to recover. Its torture, I hate it but i also love it, it proves I exist, proves I am fighting, as for progress??? Honestly, since being diagnosed and following the GET program, there is no progress. I go backwards at times but for me, exercise was such a part of my life that any small bit is welcomed by me, if that makes sense. I will blog about it at a future date! We as patients have to trust our guts and do what is best for us, which pretty much sums up ME really! xx

    • Like you, I think most people with ME were fairly active before they became ill. I didn’t own a car so walked 3-5 miles every day without fail.

      I don’t believe ME sufferers should avoid physical activity completely if they are capable of doing some. Doing what you can to avoid deconditioning is extremely important, much more important than pushing to do more. When I finally stopped pushing to increase my activity and focussed on doing what little I could within my limits I began to gradually improve where I had been getting worse.

      Recovery times are very important. If your activities make you sicker over several days or you fail to recover within a reasonable time then they are not appropriate for your level of ability, so physical activity must be tailored to the individual.

      I am restricted to a few minutes gentle exercise in a chair and walking a few meters with a frame. If I try to exceed this I end up bedridden for days, but if I keep within my limits I can do a consistent amount of activity almost everyday which has to be better in the long-run.

      As for CBT, I don’t deny that it is valuable for ANY chronic illness as a means of helping patients deal with the emotional implications of their disease. I found having someone impartial to talk to very helpful when I didn’t want to burden friends or family. Unfortunately in the UK media and in medical literature it is too often described as a cure for the physical symptoms of the disease.

  5. HopeSpirit says:

    Your posts are very thought provoking and I deeply appreciate you bringing these issues into the light!
    I don’t know what the answer is to getting a consistently named diagnosis, especially one that people (Drs included!) will respect, understand and treat properly.
    I have so many diagnostic names on my list of conditions, that they no longer carry much weight for me. It doesn’t matter the official title, because knowing a name doesn’t change the symptoms! And the medical world is struggling in how to even manage that piece.
    My first diagnosis was Fibromyalgia and it was so misunderstood. After 8 years, they realized I have a very rare autoimmune condition called, Relapsing Polychondritis (although mine doesn’t “relapse” or “remit!”). A specialist was quite angry at the “system” and told me that Fibro and CFS, IBS, etc are “waste basket diagnosis.” (In the US, we don’t even use ME=more inconsistencies!). He said these are just names given to a combination of complex (real!) symptoms that doctors can’t understand so they dump them into these umbrella labels. The problem with this, is that I went 8 years not being treated properly (my disease needs biologics, prednisone, and TNF inhibitors) and so I now have permanent damage (a majority of my cartilage is gone; and there is no know treatment to replace that. Stem cells, anyone?).
    I share my story because I don’t want anyone else to give up when they know something is wrong with their body! Fight for health, educate others, go to Dr after Dr if you need to.
    And,we, all together, need to fight for more funding to study these complex illness that are ravaging our society!
    Like mentioned before, “we” are most often previously very active, healthy beings. Something is triggering our bodies to attack themselves. To me, this is the most important factor to focus on. Why is this happening and what can we do to stop it?
    And the more the medical field recognizes this as a valuable area to study, the more people will accept that we have REAL, PHYSICAL conditions that prevent us from fully engage in life!
    We are not “just tired,” we are so fatigued that our muscles will not even cooperate in brushing our own hair. Perhaps, the word “fatigue” needs to be changed… this is disabling weakness.
    Thank you for writing such a provocative piece… it certainly has gotten us all talking!
    Be well,
    Tamara

    • Thanks for sharing your story. Funnily enough, the misconception that we are ‘just tired’ is the subject I have written about for next week’s post. I won’t comment further in case of spoilers.

  6. Steve Morris says:

    This shows how little doctors really understand what is going on. Naming a condition is really just the very first step in understanding, like when Victorian scientists used to categorise and name everything they discovered because they simply couldn’t begin to explain most of those phenomena. Sorry, not sure if I am explaining myself very well, lol.

  7. Rebecca says:

    I am from Canada and I was diagnosed with CFS. The only time ME was mentioned was in an article my specialist gave me upon diagnosis (as I was training to be a nurse before my decline in health leaving me almost bedridden) and the title of the article had CFS/ME. It described the diagnosis process and for me, my CFS is actually ME; however, no one refers to it as ME and many do not know what that is (let alone CFS much of the time!). So I refer to it as CFS but has recently started referring to it as CFS/ME – or at least try to!
    Many people do not believe I actually have a diagnosis at this point and are always asking if they have found anything or been able to answer more question about what is going on. So it is hard but I try to explain what I can about it.
    I have been tested many time throughout the last seven month (my CFS/ME is fairly recent!) and all my tests point back to this diagnosis. It is frustrating and I often think it would be easier if they did find something that others would consider more ominous but I am grateful that they haven’t missed something else at the same time.
    One of the drs I have seen recommended exercising to the point of exhaustion and then recuperating and doing it again. I didn’t listen to his recommendation as at this point I cannot even perform all of my ADLs and have heard horror stories of this. I have been recommended by a different specialist (who I now see instead of the other!) to try and do a little – ie stretching or walking – but only once I am able to perform ADLs etc. so I am grateful for that! He does do CBT and wants me to join a group for that but it has not started yet so if I do join I will let you know my experience!
    Thanks for this post. I will definitely try to use ME more.
    Blessings
    Xo

  8. moxyjen says:

    Fantastic article. I find it interesting that ME is diagnosed after psychiatric issues are ruled out. For me, they temporarily decided that I probably wasn’t mentally ill until they couldn’t get a lab result proving otherwise, then decided that it was a psych problem (no matter how much I told them my problems were triggered by physical activity and not stress). I finally got diagnosed with POTS 8 months later. I’m doing great now, but exercise made things much worse until I got some other things solved. Now I’m able to start working back to normal. Keep up the good writing. When you have an illness names are the difference between getting helped and getting sent to the psychiatrist.

  9. E. Milo says:

    Excellent post. Going to reblog, hope that’s okay. ElizabethMilo.com

  10. What a great post. You write so well. In the letter from my specialist stating my diagnosis it says ME/CFS. It seems even top consultants in this field in the UK don’t know which term to use so they’re both lumped in together. To begin with I hated the label ME worrying about the psychiatric connotations and stigma associated with it. But now, two and a half years on, I use the term ME because I don’t feel CFS gets to the seriousness of the condition and attracts way too much of the ‘so you’re just tired then’…..someone will get hurt if I hear that many more times!

    • It’s ironic that an illness with diagnostic criteria that rules out psychiatric causes is so often assumed to be psychiatric. When I was first diagnosed I thought it was a mistake – my perception of ME from the media was that it was psychosomatic so I assumed the doctors were accusing me of faking my symptoms. It took me a long time to openly admit to people that I had ME but I eventually realised the only way to challenge people’s misconceptions is to talk openly about them.

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  12. eirran says:

    Leonard Jason, St Pauls Univerity, have done 2 studies on how the name of the disease influence the attributions by medical trainees and college undergraduates.

    http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/JasonArticles/Jason2002NameAttrAbst.pdf

    All groups read the same case study of a person with classic symptoms of chronic fatigue syndrome.” “…findings indicated that the name, chronic fatigue syndrome, may be regarded less seriously than the Myalgic Encephalopathy name with respect to some important aspects of the illness.”

    http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/JasonArticles/Jason2001nameAttrAbst.pdf
    “Participants prompted with the myalgic encephalopathy name were more likely to attribute a biomedical cause to the illness, and less likely to consider patients as candidates for organ donation than those prompted with the CFS name.”

  13. Hi Sarah!
    Thank you so much for stopping by and “liking” my about page 🙂

    This is a wonderful post. I’m so thankful you were brave enough to talk about issues that so often go overlooked in the medical community! It is tragic that many patients are treated so poorly simply because “fatigue” steals the spotlight in the disease’s name. I certainly agree that a new name is very much worth fighting for if it helps patients receive better care and more respect. I usually refer to the illness as “Chronic Fatigue and Immune Dysfunction Syndrome” and try to highlight the neuro-immune aspect, but I find that even then, many people still think it’s simply “being really tired”. Perhaps using M.E. would be more helpful. But I find that even that can confuse others, since it’s such a big name. It’s a tricky situation! But I have been encouraged in recent years; finding that many more people are starting to understand the illness a little bit better (at least in my life! I pray the same for everyone else suffering.)

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  16. I’m from the US, but I always use “ME” or “CFIDS/ME.” Interesting. Maybe it’s regional. Where I live, many people don’t say “CFS” anymore.

    • Many American patients I have spoken to use ‘ME’ rather than ‘CFS’ having researched it for themselves but most of their doctors have never heard of ME and don’t recognise a distinction. Don’t know whether that’s your experience too?

      • I live in a big city so and I see integrative doctors, so a lot of them use ME or CFIDS/ME. This is on the East Coast of America. Meanwhile I have a friend on the West Coast, in California, and she uses CFS, and she actually has it. So I would say in America all three terms are used depending on your region. Sometimes I wonder if I have it, but I can’t tell with all the symptom overlap from the fibro, the Lyme, and the Hashimoto’s. I have a lot of fatigue, but it seems different from ME fatigue. I had a reactivation of Epstein-Barr several years ago and that was the closest I came to truly bone-crushing fatigue. I do have some of the other viruses associated with ME, such as HHV-6. (Actually I’m not sure if Epstein-Barr and HHV-6 are associated with it anymore; it seems like there’s a lot of conflicting research.)

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