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Diseases can stigmatize

Names of diseases have never required scientific accuracy (e.g. malaria means bad air, lyme is a town, and ebola is a river). But some disease names are offensive, victim-blaming, and stigmatizing. Multiple sclerosis was once called hysterical paralysis when people believed that this disease was caused by stress linked with oedipal fixations. AIDS was initially called “Gay Men’s disease” when it was considered a disease only affecting white gay men. Fortunately, when these disease names were changed, those afflicted with Multiple Sclerosis and AIDS experienced less stigma. Inspired patient activists from around the world are currently engaged in another major effort to rename chronic fatigue syndrome (CFS). It is a political struggle to alleviate some of the stigma caused by the language of scientists at the CDC 25 years ago.

Chronic fatigue syndrome is an illness as debilitating as Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease. Yet 95% of individuals seeking medical treatment for CFS reported feelings of estrangement; 85% of clinicians view CFS as a wholly or partially psychiatric disorder; and hundreds of thousands of patients cannot find a single knowledgeable and sympathetic physician to take care of them. Patients believe that the name CFS has contributed to health care providers as well as the general public having negative attitudes towards them. They feel that the word “fatigue” trivializes their illness, as fatigue is generally regarded as a common symptom experienced by many otherwise healthy individuals. Activists add, that if bronchitis or emphysema were called chronic cough syndrome, the results would be a trivialization of those illnesses.

Powerful vested forces have opposed changes. In the late 1990s and early 2000s, when I mentioned over the years that patients were stigmatized by the term chronic fatigue syndrome, I was explicitly told it was reckless and irresponsible to change the name. This was despite the fact that patients wanted more medical-sounding name, and our research group had found that a more medical-sounding term like myalgic encephalopathy (ME) was more likely to influence participants to attribute a physiological cause to the illness.

Over the last decade, patient demands for change have grown louder. New names have occurred for several patient organizations (e.g. the Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy and the Myalgic Encephalomyelitis Society of America) and research/clinical settings (Whittemore/Peterson Institute for Neuro-Immune Disease). Even the federal government has begun to use the term ME/CFS, and the organization of researchers changed their name to the International Association of CFS/ME. Ultimately, many activist groups want the term myalgic encephalomyelits to replace CFS. Bringing about a name change is a complicated endeavor, and small variations of language can have significant consequences among the stakeholders.

In addition to this effort to rename chronic fatigue syndrome, there is considerable patient activism to change the case definition, which was arrived at by consensus at the CDC rather than through empirical methods. Patients report and surveys confirm that core symptoms of the illness include post-exertional malaise, memory/concentration problems, or unrefreshing sleep. Yet these fundamental symptoms are not required within the current case definition. Patients want the current case definition to be replaced with one that requires these types of fundamental symptoms. If laboratories in different settings identify samples that are not homogenous, then consistent biological markers will not be found, and then many will continue to believe the illness is one of a psychogenic nature, just as once occurred for multiple sclerosis. Clearly, issues concerning reliability of clinical diagnosis are complex and have important research and practical implications. In order to progress the search for biological markers and effective treatments, essential features of this illness need to be empirically identified to increase the probability that individuals included in samples have the same underlying illness.

If progress is to be made on both the name change and an empirical case definition, key gatekeepers including the patients, scientists, clinicians, and government officials will need to work collaboratively and in a transparent way to build a consensus for change. Considerable activity is currently ongoing at the federal level on these critical issues, but only through open communications and the building of trust will there be the possibility of overcoming the past 25 years, which have been marked by feelings of anger and hostility due to being excluded from the decision-making process.

Headline image credit: Medical paperwork. CC0 via Pixabay.

Recent Comments

  1. Tanya Marlow

    Thank you. This is a much-needed article. I am halfway through writing a book, a memoir that exposes the crazy system of treating ME patients in this country. I was writing it as a severe sufferer, despite the limitations of my illness, because I am shocked by how ignorant doctors and healthcare professionals are of this particular illness. Hoping that these articles will begin to tip the balance somewhat. Thanks for adding your voice.

  2. Merry Speece

    Thank you, Dr. Jason, for this article and for all the work that you have done on behalf on people with ME/CFS. I’m pleased to find out that your book, Principles in Social Change, has just been published and have asked my public library to order a copy. I look forward to reading it.

  3. Barry Savage

    After a diagnosis of ME, the patient will not be offered any treatment for any illness at all, even when symptoms develop which are obviously not ME. The reasons seem to be that the doctor is afraid that the patient may be feigning illness and there is no treatment that will make the patient functional again. A diagnosis of MT is equivalent be being written-off.

    After receiving a diagnosis of ME there is no point in ever consulting a doctor again.

  4. Ellen Goudsmit

    Superb analysis. It’s a strange day today because I was one of the scientists who submitted criteria for ME based on the descriptions of doctors like Melvin Ramsay. They’ve been tested over time and shown to select a homogenous group. Just what we need. Abnormalities e.g. hypoperfusion in the brainstem were found in 100%. We updated them with evidence from studies by Prof. Jason, to support their use. The paper was rejected in a day by the very journal which supposedly focuses on ME/CFS. Where are doctors supposed to get their information on classic ME from? The Siberian Journal of Prefrontal Lobotomies and Wine Tasting? Unless you have a lot of signatories or the CDC behind you, you’re limited. So we have a good name, good criteria, an objective test to support the diagnosis and people who allege to be interested in fatigue syndromes such as ME can’t be bothered with a short paper which could improve diagnostic precision. The normal scientific process does not exist. And people wonder why patients get angry. Actually, so do independent scientists. If this political bias happened in cancer research, there would be uproar.

  5. Denise

    ” In order to progress the search for biological markers and effective treatments, essential features of this illness need to be empirically identified to increase the probability that individuals included in samples have the same underlying illness.” SO TRUE Dr. Jason. SO TRUE! I would add that assessment of severity and frequency of symptoms are also imperative.

  6. Catherine Richards

    You can’t effectively rename a set of symptoms that has no test or biomarker definition. Other than all the symptoms, from post-exertional malaise, immune dysfunction, digestive probs, light and noise sensitivity, POTS, to insomnia, enlarged glands, headaches, sore throat etc, are exactly those of hypothyroidism.

    Only so-called ‘modern medicine’ won’t accept their beloved TSH thyroid blood test is flawed – it doesn’t diagnose all types of hypothyroidism. So they have invented a new label for the same symptoms that don’t fall into their neat one-name-on-the-tin category.

    The longer the phyisical neglect goes on, the harder it is to turn the body systems around. How do I know? Because I was told I had severe ME for well over a decade. Lying flat on a bed unable to even sit up, I was so exhausted I couldn’t even fetch a glass of water. Needed full-time care. No help from the medical profession, except subtexts of ‘deconditioning’ and an ME clinic offering pacing and CBT. Oh and my thyroid is “fine”. I have now been treating myself, very slowly, with bought thyroid medications, and am slowly improving. Please read the ‘Stop the Thyroid Madness’ book and help bring an end to a terrible medical scandal.

  7. Joan McParland

    Thank you Dr. Jason. This article will be printed and added to the information we will be presenting at the professionals conference in Northern Ireland on 4th February in Stormont Buildings. Dr. Mark VanNess will be presenting the latest research on PEM and exercise to healthcare providers, medical students and decision makers to raise awareness of our plight and the total lack of understanding and urgent need for specialist services.

  8. Noreen

    Thank you for your blog, Dr. Jason. There is no doubt that people with M.E. are stigmatised!

    However, I think ‘CFS’ was coined around 1988 by the CDC whilst the term Myalgic Encephalomyelitis has been included since 1969 by the WHO (World Health Organisation) in their international Classification of Diseases (ICD). The current version ICD-10 lists M.E. under G.93.3 – neurological conditions.

    It was the renaming of M.E. to “CFS” which trivialised this illness and which has led to the scandal of patient abuse and lack of research.

    What has been done to M.E. patients will go down in history alongside the other abuses perpetrated against people by governments and their agencies.

  9. Piers

    Excellent, straight forward article. I agree the search for biological markers is the most important goal in order to achieve name change. Although I’ve had ME for several years, it’s the folk with Gulf War illness who I feel really sorry for at this point – they have been totally done over recently with regards to name change.

  10. Justin Reilly, esq.

    Dear Prof. Jason,

    Thank you for this much needed post on a very important topic.

    While your writing is invariably more on the mark than other academics writing on the political-sociological-medical situation surrounding ME, I find that you here omit key information which has the effect of underplaying the severity of the malfeasance and nonfeasance of CDC and NIH. I think this can be ascribed, in great part, to the conservative nature of academia in which you were trained. As the foremost scientist in this area, I feel that your contributions to the understanding of the political realities of the disease would be even greater if you painted a fuller picture for the reader.

    I encourage you to include all the key facts that will serve to present a more accurate picture of the landscape of ME politics foisted on patients by CDC. For example: At the time of CDC’s renaming of ME to “CFS” in 1988, Myalgic Encephalomyelitis already was the sole official name of the disease in WHO’s ICD since it was first listed there in 1969. In changing the name, CDC was responding to a 1984 Lake Tahoe outbreak of what it officially and repeatedly insisted was ‘mass hysteria’, but was in fact an outbreak of ME.

    Federal documents uncovered by FOIA requests showed a key reason for the change of name to “CFS” was to prevent “chronic disbursements by insurance companies.” (see Johnson, Hillary, Osler’s Web).

    In the 1994 CDC Fukuda definition process, the only clinicians and researchers with experience with ME resigned from the CDC definition committee in protest resulting in a substantially inaccurate definition which has been the standard definition worldwide for the last 20 years.

    In later years, CDC produced another definition, the patently invalid Reeves Criteria which a bald attempt to warp the science. CDC even lied in one study, saying it used the 1994 Fukuda definition, when it in fact used Reeves. And CDC misappropriated the entire CDC CFS budget for years while repeatedly lying to Congress about it in person in sworn testimony. An on and on.

    Now, the Federal government has undertaken three simultaneous bad-faith, secretive and unscientific attempts to redefine the disease and consequently many badly disabled people with ME are attempting to correct this on a volunteer basis through much hard work, but are having limited success due to CDC’s usual malfeasance regarding the disease.

    As you know, these facts provide only a small glimpse of the intentional warping of science in this disease by CDC and NIH, but providing some of them as context would make pieces on ME definition much more informative to the reader. I understand that scientists’ reluctance to offend CDC and NIH, whence most of their funding comes serves as a powerful incentive to downplay the facts of CDC’s and NIH’s malfeasance, but please try to present a more wholly accurate picture in the future. I very much welcome any dialogue you may wish to have on the subject.

    Please feel more than free to contact me at the email provided. Again, I do realize that you provide a much more accurate picture than other academics writing on the topic and I wish to thank you so much for all your excellent, groundbreaking scholarship in the field. Thank you for your consideration.

  11. Nasim Marie Jafry

    Great comments from Ellen Goudsmidt and Noreen. I was diagnosed in UK with ‘severe post-viral fatigue syndrome – myalgic encephalomyelitis’ – classic Ramsay-defined ME – in early 1984 by consultant neurologist. ME is the illness I have. The bunch of psychiatrists in UK known as the Wessely school cannot change that name to CFS because it pleases them. Though that of course has not stopped them trying. They have done a fine job of conflating ME with nebulous idiopathic fatigue and we should congratulate them on the obfuscation and harm they have caused since my own diagnosis 30 years ago.

  12. caroline higson

    Great article. Could I possible get permission to republish this in our local ME newsletter please? Full credit and weblink given :)

  13. Alice Northover

    Hi Caroline,

    Could you send your permissions request to blog[at]oup[dot]com?

    Thank you,

    Alice, Blog Editor

  14. Tracey A. Smith

    Thank you Dr. Jason for such a wonderful article! Your efforts a greatly appreciated.

  15. MNP

    Good article. When I was in highschool a friend of ours developed chronic fatigue. Being the late 90s and us being teenagers we sometimes made fun of him for it for exactly this reason. You’re otherwise fine but you’re just tired? That’s why you’ve missed weeks of school?

    We did though see he really was ill so it wasn’t all just mockery, but to this day I am ashamed of myself.

    Eventually he was able to manage it and still graduated. We lost touch a few years later but he seemed to have mostly beaten it.

  16. […] Leonard Jason reminded us of the importance of naming in his recent (short) blog post “Diseases can stigmatize” . In my previous post, I mentioned that I had a problem with using Wikipedia as a reference […]

  17. Brenda

    I wonder why the friends and relatives of CFS/ME sufferers have not stepped up to the plate and developed a fund-raising engine as exists for AIDS, Cancer, and other diseases.

    Is it the name? Is it because we generally become so isolated that we have no friends and family turns away? I think it’s time to ask those around us to do for us what they willingly do to raise funds for other diseases.

    Every Cancer walkathon could be matched by a fund-raising event for CFS/ME. Cancer is not always fatal and CFS/ME can create a life so restricted that it’s intolerable and leads to suicide and clinical depression. Why are we the patient, quiet ones who get no help –none from doctors and none with the necessary fundraising for effective research?

  18. […] to Leonard Jason, the director of the Center for Community Research at DePaul University, who wrote in a blog post for Oxford University Press that they are sometimes “offensive, victim blaming and stigmatizing.” ME/CFS patients aren’t […]

  19. […] to influence medical interns to attribute a physiological cause to the illness. In response to a past blog post that I wrote on the name change topic, Justin Reilly provided an insightful historical comment: for […]

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