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The IOM: Death by Acronym and Epic Media Fail

February 16, 2015

Background

The illness myalgic encephalomyelitis (ME) has probably existed for centuries. It has been documented since an occurrence in Los Angeles, California in 1934, followed by countless other similar events. A major outbreak at the Royal Free Hospital in London, UK in 1955 led to the coining of the term “myalgic encephalomyelitis”.

In 1988 the term “chronic fatigue syndrome” (CFS) was created in the US; this generally replaced ME in many countries, including the UK. However, the trivialising nature of the name CFS was deeply unpopular with most patients so the terms have frequently – but misleadingly – become conflated, either to ME/CFS or CFS/ME. I have lived with ME since 1981. There is still no cure nor any approved treatment. It is a global illness with a long and troubled history everywhere.

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The latest chapter

In 2013 the Institute of Medicine (IOM – renamed the National Academy of Medicine in 2016) was tasked by the US Department of Health and Human Services (HHS) with researching and developing new diagnostic criteria/clinical definition, considering new terminology and proposing an outreach strategy for their dissemination.

The resulting 300-odd page report was presented on 10 February 2015 in Washington, DC (with a 54-minute video). It received widespread media coverage – more than 300 articles and stories, according to patient organisation Solve ME/CFS Initiative  (as of 14 Feb) – which began to emerge at 11.01am, one minute after the meeting began.

Embargoed press information was clearly circulated in advance to selected media outlets and journalists. However, this information was unavailable to the recognised cohort of serious patient bloggers and advocates; those representing many of the 20 million or so patients worldwide who live with this illness were, as always, responding off the back foot. If my deduction is correct, then we are still in an era of control rather than collaboration. If patient are not key stakeholders in this process then I don’t know who is.

In the UK, there has been limited media interest so far; the Mail online carried the story, while the BMJ and New Scientist have articles behind paywalls. Articles from other countries also started to trickle through.

The media coverage

Most of the reporting which I have seen could best be described as vanilla. A brief mention of the background to the illness is coupled with two main themes: that this is a real and serious illness and now we have a new name. Muted hurrahs all round, punctuated with an occasional harrumph. But this is not the real story; the real story is the scandal of an entire patient population which has been marginalised, stigmatised and wilfully neglected for generations. The fact that the IOM, along with other agencies (the NIH’s P2P is next up), has recently been charged with addressing that appalling deficit is an insidious distraction from that deeply unpalatable core issue.

During the presentation, chair of the IOM’s committee, Dr Ellen Wright Clayton, said that the report gives advocates and patients a “tool” with which to “act up“. No, Dr Clayton, we are the ones who are ill and we’ve been doing this for far too long. Besides, the situation for patients with HIV/AIDS was – and continues to be – very different from that of ME patients. The way in which we are still treated by government agencies in all countries is a scandal – and always has been. Until that is publicly and universally acknowledged, we cannot move forward, however noble your stated intentions. The time for a complete top-down culture shift is way overdue. I may be a UK citizen but what you do affects me too. We have had enough.

The devil in the detail

Patients  everywhere responded rapidly with their comments, mostly via blogs and social media. These – along with the broader media commentary – dissected the detail (good and bad) and provided close analyses of the minutiae of the report. And I, too, have some carefully considered remarks:-

Report: (cue fanfare) Our proposed new diagnostic criteria:

->Me: Huh?

Report: …..and we suggest a new ICD-10 coding.

->Me: The European ICD-11 beta draft went online in 2012 but good luck with that.

Report: You’ll like this; there’ll be a new toolkit!

->Me: Kill me now.

Report: We say new criteria need to be disseminated and used by clinicians for this to work.

->Me: Well – duh.

Report: And we need to improve awareness and education about this disease.

->Me: Again – du-uuh.

Report: More research and funding is needed into this dreadful disease.

->Me: And again….. (you get the picture)

Report: We propose a new name. Yay! “SYSTEMIC EXERTION INTOLERANCE DISEASE – S.E.I.D”.

->Me: W.T.F?

Cost: One million dollars.

A note on the proposed new name

Systemic” – means generally affects the whole body. Um – yes.

Exertion intolerance” – at this point I see an ethereal Victorian lady with a fit of the vapours, having foolishly attempted to bestir herself from her chaise longue (no doubt in order to retrieve her copy of Freud’s latest blockbuster). Great image for patients already long stigmatised as the lazy, crazy people.

Disease” – well I’ll get on board with that one but what changed? Patients have been wanting this for decades but were advised that there wasn’t enough evidence to support such a label. Did someone put something in the water at the IOM?

“ME” sucks. “CFS” sucks. “ME/CFS” and “CFS/ME” suck. “SEID” sucks. They all suck. Probably best left alone until we’ve focused on the research. With realistic funding. And a patient-led, pro-active media/lobbying strategy, in which the patient community controls its own agenda (see previous post.) A counter-balance to the current bland mainstream reporting.

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What happens now?

This report needs to be accepted by HHS and other agencies before it becomes effective; however, it seems likely that the recommendations will be adopted. At that point, it will be interesting to see how far its impact extends into other countries.

In fairness, the report contains some excellent work which could bode well for the future. The IOM committee members undertook a very challenging task. Many patients have welcomed the recommendations and believe that they emphasise the urgent need for action and will accelerate the speed of change. Arguably, one of the most pressing needs of the international patient community is hope; if the report achieves this, then it will have improved the lives of some. However, a less charitable observer might conclude that we have heard these platitudes too many times before and that anything of value here is several decades too late.

Whatever happens next is certainly too late for the millions of patients who have already died during the last eighty years. Most of them never had their illness validated nor were they treated with respect and compassion in their lifetimes. And what assurance is there that anything concrete will happen during the next thirty years? Another generation of us – including me – will have died before then. That sucks.

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If you have been affected by any of the issues raised in this post, then please call A.A. (Acronymics Anonymous) immediately. Acronyms can be fatal.

 

31 Comments leave one →
  1. lucey001 permalink
    February 16, 2015 11:58

    Thank so much, I’ve been ill 27 yrs and am so grateful for all you and all the excellent bloggers on our struggle to get the darned name right. We will overcome!

    Like

  2. admindxrw permalink
    February 16, 2015 13:43

    The report’s authors have got themselves into a tangle over coding. There is no excuse for them having published unreliable information around ICD and I trust this is going to be corrected for the final version.

    The report states on Page 31:

    ‘A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”’

    and on Page 50:

    “In the World Health Organization’s International Classification of Diseases, Tenth Revision, which will be implemented in October 2015, the clinical descriptions of ME and CFS are identical, yet ME is classified as a disorder of the neurologic system (ICD G93.3), while CFS is considered a synonym for chronic fatigue, which is classified under “signs, symptoms, and abnormal clinical and laboratory findings, not elsewhere classified” (ICDR53.82).1

    and gives the source reference:

    1 The World Health Organization’s International Classification of Diseases, Tenth Revision, can be accessed at http://www.icd10data.com/ICD10CM/Codes (accessed January 13, 2015).”

    To disentangle:

    Clarification 1:

    The version of ICD-10 that is scheduled for implementation in October 2015 is the U.S. specific, “clinical modification” of the WHO’s ICD-10, known as ICD-10-CM (for diagnosis codes) and ICD-10-PCS (for procedure codes).

    This adaptation of ICD-10, for U.S. use only, is the responsibility of the National Center for Health Statistics (NCHS) and Centers for Medicare and Medicaid Services (CMS).

    It is not the responsibility of WHO or WHO-FIC.

    The code sets for ICD-10-CM/PCS are currently subject to a partial code freeze, during which only limited updates and revisions can be made, for example, to include new viruses.

    The ICD-10-CM Coordination and Maintenance Committee is jointly chaired by NCHS and CMS and is responsible for considering updates and revisions prior to, and post implementation.

    Any code requests that do not meet the criteria for consideration during a partial code freeze will be evaluated for implementation within ICD-10-CM/PCS on and after October 1, 2016, once the partial freeze has lifted.

    This is a public process; meetings to discuss corrections, revisions and updates to ICD-10-CM/PCS are held in public, twice yearly, followed by public comment periods. Submissions come from federal agencies, the APA, clinicians, the coding industry, patient interest groups and individuals.

    Information about the ICD-10-CM revision process and making submissions here: http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

    So any potential inclusion of SEID within the U.S. specific ICD-10-CM, either as a discrete new code, or as an inclusion term to an existing ICD-10-CM code or as a replacement for existing codes would be the purview of the ICD-10-CM Coordination and Maintenance Committee and not the WHO, Geneva.

    The WHO’s ICD-10 is also subject to an annual revision and update process. This is the responsibility of the WHO-FIC Update and Revision Committee (URC). The URC update and revision process is expected to continue for several years until most WHO Member States have transitioned to ICD-11.

    In my view, given how conservative the URC is and with ICD-11 currently scheduled for completion in 2017/18, I doubt that URC would consider including SEID within the WHO’s ICD-10, if approached to consider this by the North American WHO-FIC Collaborating Center or through the Collaborating Centers for Classifications, Terminologies and Standards at Stanford or Mayo.

    Suzy Chapman for Dx Revision Watch

    Like

    • February 16, 2015 15:03

      Suzy – thank you so much for this, and the clarification in your following comments.

      Thanks to your excellent work, I had realised the mistake in the report (as you describe). However, I wanted a pithy, one-line reply to the assertion about ICD-10, so I had to dispense with the corrective detail!

      I’m very grateful for your contribution to this blog post (and in the comments below) as it may inform some readers about the true state of play with both ICD-10-CM and ICD-11.

      Best wishes

      Like

      • admindxrw permalink
        February 16, 2015 16:17

        Thank you, Valerie.

        Although the ICD-10-CM update and revision mechanism is a public process and requests for additions or modifications are tabled in meeting Agendas (or Topic Packets, as they are also known), followed by the posting of videocasts of both days’ proceedings, a meeting summary and a public comment period, the WHO-FIC’s ICD-10 update and revision process is not a public process.

        So it would not be easy to monitor the progress of any potential WHO-FIC or WHO Collaborating Center proposals for potential addition of SEID into the WHO’s ICD-10, unless the agencies steering a proposal went public with its progress.

        As far as ICD-11 is concerned, stakeholders need to register with the Beta draft for enhanced interaction with the drafting platform, for access to additional resources and in order to submit proposals for addition of new entities or to suggest content changes to existing entities, via the Proposal Mechanism. New proposals to the evolving Beta draft come from both the Topic Advisory Groups and externally.

        Proposals are then subject to review by the chairs and managing editors of the appropriate Topic Advisory Groups (TAGs), sometimes external review, and by the RSG. Proposals that are approved, provisionally, are then entered into the Beta draft and marked “Implemented” in the Proposal Mechanism. One can follow the progress and status of proposals, but one cannot view the TAGs’ rationales or discussions notes that result in Approval or Rejection of a specific proposal in the public version of the Beta drafting platform or the Proposal Mechanism.

        Proposals for new entities need to be supported with rationales and references. In theory, any registered stakeholder could propose the addition of the SEID term and construct to ICD-11, supported by rationales and references.

        Like

  3. admindxrw permalink
    February 16, 2015 13:50

    Clarification 2:

    The report refers to “WHO ICD Tenth Revision” coding of ME at G93.3 (under Diseases of the nervous system chapter) with CFS at R53.82 (Symptoms, signs chapter).

    It is important to note that this chapter placement and coding is specific to the U.S.’s forthcoming ICD-10-CM. It does not apply to the WHO’s ICD-10.

    In the WHO’s ICD-10 (published in 1992), PVFS is the ICD “Title term” and is coded under the G93 parent class, at G93.3.

    (B)ME is the inclusion term under PVFS, and assigned to the G93.3 code.

    CFS has never been included within ICD-10 Volume 1: The Tabular List and remains indexed only to G93.3, within Volume 3: The Alphabetical Index.

    The WHO’s ICD-10 Version: 2010 can be viewed online here:

    http://apps.who.int/classifications/icd10/browse/2010/en#/G93.3

    ICD-11 is being developed by an international Revision Steering Group (RSG) that reports to WHO. Reporting to the RSG are numerous international working groups (known as Topic Advisory Groups) and subworking groups. The working groups’ recommendations are advisory and final decisions (after peer review and in some cases, field testing) lie with the WHO classification experts.

    The Beta draft for ICD-11 is an ongoing process and proposals are still coming in and being evaluated and in some cases, field tested, across all chapters. But the draft will need to have been finalized and put out for public review by early 2017, if the RSG is going to have ICD-11 ready for World Health Assembly (WHA) approval by May 2017.

    The three ICD-10 legacy terms, PVFS, (B)ME and CFS have been absent from the Beta draft since early 2013.

    (At that point, the Beta draft had CFS as the Title term, (B)ME specified as the Inclusion term, and PVFS listed under Synonyms along with around a dozen other terms scraped from various terminology sources, which had included the yet to be implemented, ICD-10-CM terms, “Chronic fatigue, unspecified” and “Chronic fatigue syndrome NOS”.)

    WHO has said to various enquirers, including the Scottish Health Directorate, a joint enquiry by several UK patient orgs, and myself, that the placement of ME and related conditions within ICD-11 is still unresolved and that more time and input from the relevant working groups is required.

    WHO has confirmed three times now that there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the ICD-11 classification of mental disorders.

    I have also been told, in writing, by ICD’s Dr G Reed: “That the easiest way to make this absolutely clear will be through the use of exclusion terms.” However, Dr Reed would be unable to ask that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily Distress Disorder) until the conditions that are being excluded have been restored in the classification. That at such time, he would be happy to request exclusions.

    Suzy Chapman for Dx Revision Watch

    Like

  4. admindxrw permalink
    February 16, 2015 13:51

    Clarification 3:

    The IOM report gives a link for ICD Tenth Revision.

    The link the authors provide is for a U.S. commercial site that aggregates coding data from a variety of sources. It also scrapes disease and disorder descriptions from a variety of sources, including non ICD sources.

    The correct link for the U.S. specific ICD-10-CM (FY 2015 Release) should have been given as:

    http://www.cdc.gov/nchs/icd/icd10cm.htm

    from which zip files and PDFs for the latest ICD-10-CM release (FY 2015) can be downloaded.

    The correct link for the WHO’s ICD-10 Version 2010 is:

    http://apps.who.int/classifications/icd10/browse/2010/en

    where the electronic version of ICD-10 Volume 1 can be accessed for free.

    It is important to note that for the WHO’s ICD-10, there are NO definitions, disease descriptions or other descriptive content included for PVFS, (B)ME or CFS.

    Similarly, within ICD-10-CM, there are NO definitions, disease descriptions or other descriptive content included for PVFS, (B)ME or for the R coded, Chronic fatigue, unspecified or Chronic fatigue syndrome NOS.

    So the authors’ statement, “In the World Health Organization’s International Classification of Diseases, Tenth Revision, which will be implemented in October 2015, the clinical descriptions of ME and CFS are identical (…)”

    is erroneous, since there is NO descriptive content within either classification for any of these terms.

    However, for ICD-11, all ICD Title terms will be assigned short and long definitions for the print and electronic versions and other descriptive parameters.

    Suzy Chapman for Dx Revision Watch

    Like

  5. admindxrw permalink
    February 16, 2015 14:37

    A couple of additional points:

    Canada, Germany and Australia also have country specific “clinical modifications” of the WHO’s ICD-10 and are responsible for their own update and revision processes. Some other countries are also using the Australian modification, (ICD-10-AM).

    In the Canadian modification (PVFS, BME, CFS) and the German modification:

    https://www.dimdi.de/static/de/klassi/icd-10-gm/kodesuche/onlinefassungen/htmlgm2015/block-g90-g99.htm

    G93.3 Chronisches Müdigkeitssyndrom

    Benigne myalgische Enzephalomyelitis
    Chronisches Müdigkeitssyndrom bei Immundysfunktion
    Postvirales Müdigkeitssyndrom

    all three terms are included in the Tabular List, under Chapter 6 Diseases of the nervous system, at G93.3, though with different hierarchies.

    For ICD-11, the ICD-10 concept of discrete chapter location has been dispensed with.

    ICD-11 permits multiple parentage, which means that disease and disorder terms can be assigned a “primary parent” and a “secondary parent” across two or more chapters.

    Disorders which straddle more than one chapter, for example, skin neoplasms, or eye diseases in diabetes can be accessed under two or more relevant chapters, though the code remains the same as the code assigned under the “primary parent.”

    Mulltisystem diseases could potentially be represented within ICD-11 under more than one chapter or under a Multisystem Diseases linearization.

    Suzy Chapman for Dx Revision Watch

    Like

  6. February 16, 2015 18:50

    Now is not the time for a new name and ICD code.

    “Studies show that it takes an average of 17 years to implement clinical research results in daily practice” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC130085/). By implementing SEID we start the clock over again. At least ME has been around for a long time and the CCC since 2003. We also have the risk they will do this to us again 5 years from now which starts the clock over again. It also takes years to get an ICD code.

    It will cost huge sums of money and time to rollout SEID. Time and money that would be better spent on research and solutions. We’ve been badly underfunded for years. Where are we even going to get the money for a rollout never mind additional funds for research?

    Where is the cost/benefit analysis to support going to a new name and ICD code? I’ve yet to hear of one existing. I bet if it was done it would clearly show this is not in the best interest of the patients.

    We have international consensus from our experts that CCC and ME and WHO ICD G93.3 will work. SEID is US only. We need international consensus if we are to solve this beast.

    Like

    • February 16, 2015 18:58

      Agreed. As I said, “Probably best left alone until we’ve focussed on the research…..”. The ICD coding recommendation is simply wrong (see previous comments).

      Thank you for your comment.

      Like

  7. SCIENCE ME permalink
    February 17, 2015 06:02

    Reblogged this on SCIENCE ME and commented:
    Exactly what I think. Nothing more to add.

    Like

  8. Celia Harrison permalink
    February 17, 2015 06:14

    Thank you this is the best post I have read about this. who could have imagined they could come up with a name so horrible after tagging us with CFS for decades. They knew the patients were going to be angry about the name that is why they released their report to selected journalists so they could get the public propagandized.

    Like

  9. Joanna permalink
    February 17, 2015 13:55

    I am more and more puzzled as I read this blog post. Who was it intended to reach?

    First of all, I am 62 years old and live in the UK, supported only by benefits, including payments by my local council and through Disability Living Allowance for carers to come in twice a day. I am almost totally bed bound, i.e. I can make it to the kitchen and to the toilet to get food and relieve myself. Beyond that, any effort will put me into more extreme symptoms for 2-3 days at least. Bathing is particularly a great problem, as so far I have not been provided with a bath lift and I have orthostatic intolerance as well as Fibromyalgia and probably ME.

    I have spent many many hours reading and learning over the last 3 years. Before that I was ignorant about this illness I most likely have, and no doctor will discuss it with me. Even my Fibromyalgia is not being properly treated except with Lyrica, which does little good.

    Now back to your post. I have not read the whole report but I did watch the full video online of the IOM presentation. I agree with most of your feelings expressed above, but since the report came out, I’ve seen nothing but conflicting articles and posts from various patient groups and bloggers, mostly divisive between those who believe they have ‘real’ ME and those who feel that this report gives some hope, or that we should not shoot the messenger.

    To my understanding, the IOM were not charged with doing many of the things that the patient groups and bloggers are so angry with them about. According to what I have read and listened to from their video, they took this task extremely seriously, deeply felt the concerns of patients, and made statements and recommendations which were as strong as they could possibly make in order to SPARK the actions that they WERE NOT CHARGED OR AUTHORISED TO TAKE.

    We are all extremely distressed that we have suffered for years and sometimes for several decades (It’s over 12 years now for me) and have been treated extremely badly by the whole societies in which we live, as well as international bodies that have not stepped in to help. However, there is no way that the continual nit picking and anger at details I am seeing is going to make that situation better. It is likely to make it worse. If we cannot be grateful to the IOM for doing what they were asked to do, with a degree of conscientiousness and care, a high degree of cooperation between them (and they were both medical professionals as well as non-medical/non-scientific people so this is no small accomplishment); if we cannot take the trouble to understand what it was they were charged with–for example the need for a new name that might be appropriate and accepted by all parties concerned, and specifically to draw up diagnostic criteria that primary care professionals could use more easily and clearly…… then we are not going to be thought of too highly as a patient group who tries to cooperate and drive our own care criteria, etc.

    My understanding was that those on the IOM committee were not paid for the work they did. They examined more than 10,000 documents, I believe. Is this not true? To assimilate all of that material and to draw up a name and diagnostic criteria with the knowledge that they will be under the magnifying glass and that this is a particularly critical situation which needs to be addressed in a way that will move things forward with the bodies who alone can act on their recommendations… well, that’s a HUGE task and a very high pressure one.

    I am grateful and not suspicious. However, if my lack of suspicions is proven to be naive, I will then become more cynical about it all than I already am. Being in the UK and having seen nothing that would have reached my GP on this subject so far, it seems clear that the SMC is the organisation through which these stories are being funded, and that the psychiatric lobby still have a stranglehold.

    I am angry… and becoming angrier… but not just with the health professionals who seem worse than apathetic at best, about obtaining scientific information and attempting to understand us and our needs as well as working with us in a way that is somewhat helpful at least. I AM ALMOST AS ANGRY WITH MY FELLOW SUFFERERS FOR MAKING SUCH A TO-DO about some people like me who have been diagnosed with Fibromyalgia (which some researchers and clinicians seem to believe is a type of ME, or at least a co-morbid condition in many sufferers, and also PWME who insist that if we are not lying in a darkened room with multiple chemical sensitivities, possibly using a feeding tube, etc., then we do not have TRUE ME. This seems little different to me than being told ‘You don’t look sick’. I am very sick. I was very sick from around the time I was first diagnosed with Fibromyalgia. Exercise Intolerance was a problem from that time onward. I never benefited from exercise. I always had the payback days of agony and exhaustion. I have tried to learn as much as possible, but there often seems a kind of superior attitude by those who have been engaged in all this for over a decade and who have so narrowed the criteria and conditions in their minds that almost nobody is going to be diagnosed, let alone treated properly. If there are indeed millions of people with this illness worldwide, then there will also be a wide variety of symptoms WITHIN THE BASIC CRITERIA (and I do meet the ICC and CCC criteria, although no doctor will even discuss them with me.

    Likewise, just as I have not received proper diagnosis, there will be hundreds of thousands of others who will not be diagnosed. It seems that at once patients are angry about the simplifying of the diagnostic process, and angry about not having been diagnosed. Somewhere, those who have been given the task to come up with recommendations must do so in a way that will be likely to be facilitated by medical associations and organisations such as the NHS, and understood by government bodies who must assess for disability benefits and care packages. Please, please, lets stop and think about the end result of all our anger and all we publish online to express it. If we are writing only for others like us, we need to at least keep in mind that what we write will be read by those who do not yet have a diagnosis, and those who are not able to fully comprehend and process hundreds of thousands of pages of history and symptom information that some of you have done. I have even read comments to the effect that if it somebody has the strength and the cognitive ability to compose a long post or read many pages of material, maybe they don’t really have ME. Now that is really shooting ourselves in the foot! Do we, like those around us who constantly forget or disbelieve that we have a chronic multi-system illness which is VARIABLE and UNPREDICTABLE, want to say that if someone can function at a level we ourselves do not function AT THE MOMENT, then they do not have the same illness?

    I want my NHS to recognise this illness and to use a name that is better than CFS. We all want that! I want my NHS and BMA (unlikely, I know, as long as Wesselly is pulling strings) to publish materials and train doctors, nurses, physical therapists, and carers of various sorts, as well as hospital staff, to treat us in the way we need to be treated to not be made worse. I want the recommendations of CBT and GET to be forever banned and to be condemned loud and clear, so that doctors will not be telling patients to get exercise, instead of knowing how to guide us to pace activities, allow and prioritise care which prevents us having to do self-care when it is beyond what we can safely do (e.g. me taking a bath, which is way over the top of my capacity for safe activity). The IOM could not do these things. They could only do what they were asked to do. If we don’t shut up about every little detail with which we do not agree, and try to get behind the dissemination of their report and the implementation of what they have recommended, then we will continue to suffer between our rock and our hard place.

    Like

    • Onirical permalink
      February 19, 2015 17:51

      Blimey, this comment contains more words than the original blog post…

      Like

  10. Joanna permalink
    February 17, 2015 14:00

    Correction to my above post: Re the SMC, I meant to say that is the organisation through which this information is being ‘funneled’, NOT funded. Sorry for the mistake.

    Like

    • February 17, 2015 16:08

      Thank you for your comments, Joanna. I’m sorry you felt my post was not helpful.

      I wish you all the best.

      Like

  11. cathy permalink
    February 17, 2015 15:57

    instead of discussing names put the time & money into research to find a cure for this dreadful disease/
    illness

    Liked by 1 person

  12. February 17, 2015 18:35

    Thank you for the excellent post, Valerie. Few people have pointed out that the media response was “vanilla”. The reason the reporting was so tepid is that there was nothing to report. The IOM report was, in essence, a review of the literature, which is not news. The new name is not particularly enlightening, and it is equally as meaningless for us. (And for the medical world.) The IOM definition is even more non-specific than the one the CDC is using now. So, there you have it. Vanilla all round.

    I would like to point out, for those who believe that “multi-system” describes a set of illnesses, that all diseases are multi-system. Cell receptors for the immune system, the endocrine system, and the nervous system are shared, and there is an intimate connection between cytokines, hormones, and neurotransmitters. To call a disease “multi-system” is basically the same as calling a disease a disease. It is redundant.

    See my critique of the IOM report from a more medical standpoint here:

    http://cfstreatment.blogspot.com/2015/02/the-iom-report-good-bad-and-absolutely.html

    Like

    • February 17, 2015 22:26

      Thank you for your comment, Erica. I really appreciate it.

      Thank you also for the link to your excellent blog post. I greatly value your consistent efforts in covering the terrible history – past and present – of this illness.

      Best wishes.

      Like

  13. February 19, 2015 12:17

    Agree with much of what you say, Valerie, I honestly feel more jaded than anything by the IOM report and don’t much like the name. Neuroimmune character of ME is not reflected at all in SEID. And I am fed up having to be grateful for a truth that we as patients have known all along. Like you, I have been ill for over 3 decades and am not excited by new reports proclaiming the illness to be real and physical. I have known this since the first day of my illness in autumn 1982, and was eventually diagnosed in early 1984 with ME by Professor Behan, then Doctor. I don’t agree that the name ME sucks, however, though maybe renaming encephalomyelitis encephalopathy as Dr Charles Shepherd suggests is way to go, though that has never caught on. I would be happy with Ramsay Disease or post-exertional neuroimmune dysfunction. Bottom line is I want – like everyone else – properly funded research for an illness that has been wholly corrupted by ignorance and arrogance from within the medical profession.

    Like

    • February 19, 2015 13:35

      Thank you for your comment, Nasim. I appreciate it – and also the work which you do on behalf of the ME community.

      I personally don’t have a problem with the name “ME”; as far as I’m concerned that is the disease which I have. However, I think that it has become so tainted by ill-informed debate and bad-tempered argument that it no longer serves us well. In addition, the acronym ME is most unfortunate and has made us the butt of far too many jokes and innuendoes.

      At this point, I do not think a name change is a priority, which is why I said in the post “Probably best left alone until we’ve focussed on the research…..”. I would always have preferred “Ramsay’s disease” but that could only have worked right from the beginning; in the current policy climate, it’s a non-starter.

      Thank you again for your interest. Best wishes.

      Like

  14. February 19, 2015 17:57

    Thank you Valerie as usual.
    There is much to digest here but I was also particularly interested in how the media outlets have handled the ‘story’ in the US. To me it seemed that the SMC has opened a branch across the pond…
    Best wishes and I hope you feel somehow better soon.

    Like

    • February 19, 2015 18:24

      Thank you, Onirical. Yes, I wondered the same as you regarding the SMC! However, journalists in the US operate differently to UK journalists so I don’t think it’s possible to make a realistic comparison.

      Thank you for your good wishes. I’m certainly in need of some recovery time.

      Best wishes to you too.

      Like

  15. February 20, 2015 12:19

    Reblogged this on The Other Side Of The Stretcher and commented:
    I have always said “symptoms are not acronyms!”
    People NEED to wake up!

    Like

Trackbacks

  1. The Secret Files Unwrapped: Part 2 – Control, not Collaboration | valerieeliotsmith
  2. The Secret Files Unwrapped: Part 2 – Control, not Collaboration (with file download) | valerieeliotsmith
  3. PAUSE-REVIEW-REFLECT: towards a bigger picture? | valerieeliotsmith
  4. The IOM: Death by Acronym And Epic Media Fail – The York ME Community
  5. PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version] | valerieeliotsmith

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