Global Call-to-Action: Help secure the World Health Organisation’s Classification of ME & CFS

Categories: Actions, Featured actions

Important call to action! We need all hands on deck for a simple, but important task.

The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition.

Suzy Chapman & Mary Dimmock have been working tirelessly on this issue, and they need our help. They need people to go into the ICD system and agree with their proposal and/or make a comment. Read their full proposal here.

Chapman and Dimmock recommend that the disease be listed as Myalgic Encephalomyelitis and Chronic Fatigue Syndrome for the “concept titles” for the disease. (The disease was previously indexed as “Benign Myalgic Encephalomyelitis” and “Postviral Fatigue Syndrome.” The recommendation is to change those titles since the disease is not benign, and not all cases are postviral. Postviral Fatigue Syndrome will be listed as a synonym of the disease.)

It’s also being recommended that ME and CFS  be retained under Chapter 08: “Diseases of the nervous system” and “Other disorders of the nervous system.”

The ICD-10 first came into use in 1994, with countries gradually adopting it over time. (The U.S. adopted the ICD-10 in 2015). It is only now being updated to the ICD-11, which means that the classifications for ME and CFS in ICD-11 will last a long time. It’s crucial that we take action now!

The deadline for comments on the ICD-11 is not yet clear but the sooner we submit our comments, the better to ensure that ME and CFS are properly classified in the new edition.

*****

Follow these steps to show support for the classification:

1. Register at this link.

(Note: you may find that you can’t complete the registration form without naming an organisation to which you belong. You could consider registering as a #MEAction member or as member of a Facebook group.)

If you are having problems negotiating the registration page, check out short WHO tutorial

2. Click on this link to see the proposal.

3. Scroll down through the proposal to the bottom where you’ll see: “Agree” and “Disagree” buttons.

Click “Agree.”

 

 

 

 

4. There is also an “Add comment” button, where you can add a comment. You’ll see comments from other people there. While it is not essential to add a comment, it is a good idea as some of the “Agrees” have disappeared from the system (there may be a bug in the form; no comments have disappeared). Adding a simple comment like, “I agree with this proposal,” will ensure that your support remains visible.

If you would like to make a more elaborate comment, the following are key points from the proposal, which you could use:

  • These three terms should continue to be classified in the neurological chapter, as was done in ICD-10, until such time that research provides the evidence to support a more appropriate classification.
  • The term “postviral fatigue syndrome” should be removed as the lead term because not all cases are postviral. Instead, the terms “chronic fatigue syndrome” and “myalgic encephalomyelitis” should be elevated to concept titles, each with their own separate code. This is necessary for correct disease tracking and for accurate population statistics.
  • The ICD-10 term “benign myalgic encephalomyelitis” should be modified to “myalgic encephalomyelitis” as the disease is not benign.
  • Reciprocal exclusions should be added between these three terms and the word “fatigue” (as was done in ICD-10) and also between these terms and bodily distress disorder.
  • These terms should not be classified and/or dual parented in either the symptoms chapter or the mental health chapter in the ICD 11 Handbook.

5. Send this information to your local ME/CFS organisation, and ask them to support the proposal.

****

Mary & Suzy also suggest:

  • If you are commenting on behalf of an organisation, please indicate the organisation’s name in your comment.
  • You won’t be able to edit, add additional content, or delete your comment once it has been submitted ‒ so you may want to prepare a draft, and copy and paste it into the field.
  • You can include references to papers, reports, etc. in support of your comments but you won’t be able to upload files.
  • At the moment, it is not clear by what date comments on proposals will need to be in by in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. The sooner, the better.

***

To receive updates on Suzy & Mary’s proposal, follow Suzy’s Twitter account: @dxrevisionwatch

***

For queries, email Mary or Suzy at:
Mary Dimmock: medimmock@gmail.com
Suzy Chapman: dxrevisionwatch@page1.myzen.co.uk


Categories: Actions, Featured actions

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56 comments on “Global Call-to-Action: Help secure the World Health Organisation’s Classification of ME & CFS
  1. valeria giaroli says:

    necesitamos un cambio

  2. Lois Greensill says:

    I agree with this proposal.

  3. @WHO Need to have WHO day for M.E., myalgic Encephalomyelitis yearly on May 12th.

  4. I suffer from fibromyalgia, chronic pain and fatigue. I agree with this proposal.

    1. Michelle Fielding says:

      I agree with this proposal the labelling is very important to people’s understanding and the subsequent way we are treated as a result…. Thank you

  5. Réjean says:

    I agree with this proposal

  6. Isabel López Moreno says:

    Estoy de acuerdo con que se modifica la SfC/EM y se le de la categoría que merece

  7. Marie Josee says:

    I suffer from ME since 1999. Cannot work anymore. I agree with this proposal.

    1. Moira Lewis says:

      I have had M.E since 1983 and I agree with this proposal.

  8. Marie Josee says:

    I have ME since 1999. I agree with this proposal

  9. phil green says:

    dear WHO

    I agree with this proposal !

    *************************************************************************************

    please be aware that dr baron hyde has absolute proof that ME causes encephalitis – he has a whole catalogue of mri images obtained through the correct expertise and special mri software

    *************************************************************************************

    he is an absolute ME expert and you should follow his advice closely when it comes to ME classification

    millions of people will be dealt a terrible blow of injustice if you change ME to psychriatric classification

    millions of lives are in your hands, please think very carefully about what you are doing – and dont listen to the PACE team – they are a busted flush and totally exposed as incompetent scientists !

    ME is a bio medical illness and must NEVER be given psychriatric classification

    the evidence it all out there now !

  10. Beverley Charlton says:

    I welcome these proposals. For too long ME & CFS have been classed as the same illness which has left severe ME patients like myself in limbo after all CFS treatments under NICE guidelines have failed to bring even slight relief for our symptoms

  11. Viktoria Kjærgaard Sivertsen says:

    I have ME since 2004 and i agree whit this proposal.

  12. Nina Persson says:

    I suffer from ME since 2005. Cannot work anymore. I sleep 20 houers day/night and i need help whit everything. I agree with this proposal.

  13. I have had chronic fatigue syndrome for 26 years and agree with this proposal.

  14. Shy says:

    Everyone please be aware commenting on the page you are currently on will not affect the action being taken on the WHO or ICD as this is just the MEaction website. The comments must be placed on the page per the instructions in the above article.

    (Not an admin, just another patient)

    My personal opinion is that any criteria involving the BDD specified in this draft of ICD is that it is the reoccuring trend of doctors to recognize the misogynistic concept of hysteria. If finalized, BDD (not body dysmorphic disorder which also uses this letter formation, but bodily distress disorder) would be a mental illness label ascribed almost entirely to females/women, particularly in places where women’s pain is often dismissed more quickly than the medical complaints of men (which sadly is fairly global).

    Any doctor who has met you for 5 minutes could add this label to your health records because they feel your level of distress about ANY illness is “disproportionate.” Seem a little too sad you have cancer? Hysteria. Cried because you were diagnosed with MS? Somatiform disorder. Tracked the symptom of bleeding profusely a little too well? She’s a got BDD. BDD aids in the power imbalance between doctor and patient and adds an additional component of further fear of being dismissed as “nuts” because you had the gall to be concerned about your health before you up and died. Many people already miss pap smears, colonoscopies, breast cancer screening, blood tests, vaccinations etc. For multiple reasons including cost, fear, religious concerns. People die from illnesses that could be treated earlier if these tests were done when recomended as part of preventative care, but are not due to these reasons.

    BDD and any psychosomatic illness label belongs in the secure garbage with the used needles. The continuation of the legacy of hysteria and any illness born out of patients all being irrational should be done away with unless it has very strict, justifiable criteria that can be proven legitamate and will not be unfairly leveled almost certainly at women, people of color, disabled people, mentally ill (believe it or not we get physical illnesses too and many people with mental illness die because doctors too quickly dismiss their illnesses as just part of their psychiatric/brain illness without even investigating.), other minorities etc. as such often have during their long use and medical discrimination’s long terrible existance.

    I caution any doctor from supporting the overmedicalization and specification of new mental illnesses that could place actual patients with rare, uncommon, unknown illnesses from forever being denied medical care because you didn’t know enough or had too much compassion fatigue to make the efforts necessary on behalf of your patients.

    Any attempt to link ME/CFS to BDD would further the connection and assumption that ME/CFS is a hysterical women’s disease and fully biosocial-psychosomatic (which has never been the case) is an injustice at patients with ME and a disrespect of every illness where patients were dismissed and mistreated throughtout history when their complaints were real and people died or became disabled because of it and doctors ignorance. It also aids in the neglect of male patients and children, and continues the stigma of the illness. It destroys the opportunity for all patients to obtain proper care, treatment, support, benefits, and the small chance of recovery involved.

    The illness has a wide breadth of evidence across many different medical fields and tests that it is physical in origin and treating it as a mental illness provides no relief for the illness’s symptoms.

    At best mental health treatment during the course of ME/CFS can aid comorbid psychiatric disorders or help in the processing of stress, grief, accompanying anxiety, dismissal and stigma, abandonment and neglect by family, friends, doctors, community, etc. that come with any long term chronic illness, particularly one that can be this disabling for such a high proportion of patients.

    We are dealing with an era of medicine where treatments are given to people who don’t need them, where the patient has less of a clue about what they feel than a doctor who hasn’t even looked at them and known them for 30 seconds does, where old disproven fake diagnoses are ascribed to people who have real problems, where pompousness of doctors who believe we know all there is to know about the human body reigns supreme, its fine to let an illness that destroys lives be underfunded for decades, and you as a patient have no rights to respect, privacy, compassion, care, or support.

    Well I don’t know about you but I think it’s time we add a new proposal to ICD-11: Dissmisive Arrogant Medical Professional and Family Member Disorder, classified by delusions of granduer, high compulsivity for control over a person you barely know, know-it-all levels of arrogance, lack of interest in patients, delusions of granduer that all that there is to know about the human body is known and that no new medical disorders could ever exist, hyperfocus on problems you can fix with no admission of problems that you can’t, aloofness about refering to a doctor who could help, lack of compassion, insistance on ignoring the patient if their caregiver/spouse/friend is in the room, condescending body language involving disparaging pats on the shoulder or head, insistance that the patient you haven’t seen before does xyz or doesn’t do abc correctly, enough, or with enough effort.

    Already this diagnosis is more specific than most, I’m sure you know a few who fit it. 😉

    1. Jandy Spurway says:

      I do not understand why a name is so important, at the end of the day what other people think is not our business – we know what it is like to be ill – does it REALLY matter what anyone calls it?

      I have coeliac’s and we do not get any gluten free food any more – all over the counter medicines have to be paid for by the patient now – we will not have an NHS soon if we put so much pressure on it.

      The only way forward is with education so that we can all start to take responsibility for ourselves – at the ”dreadful day of judgement” when we come to the end of the road we will have to face ourselves with no one to blame – painful as it may be. “To thine ownself be true” W.Shakespeare

  15. Karin Lehmann says:

    I agree with this proposal.

  16. Shari A Mattice says:

    I think that the world needs to quite being unfair to people with this condition, if someone has kidney failure; they call it kidney failure, if someone has their pancreas fail than it fails to produce any insulin! Their blood glucose levels rise above normal. then eventually insulin fails to open up the cells so that their glucose is unable to leave their bloodstream, & instead it begins building up in tissues such as their kidneys & eyes.

    I say if the definition for Heart Failure is: Inability of the heart to keep up with the demands on it and, specifically, failure of the heart to pump blood with normal efficiency; then Mitochondria Malfunctioning is the inability of the Mitochondria to keep us with the body’s demands for energy (ATP), & Mitochondria Failure is when the Mitochondria fail to put out & rebuild the body’s energy (ATP/ADP) with the Mitochondria’s normal efficiency too! After all malfunction is malfunction, & failure is to fail; whether we are talking about the Mitochondria, or the Heart or Kidney (etc)!

    People can get help paying for diabetic supplies, when their pancreas is not working correctly, but people with their Mitochondria failing to adequately make their body’s energy (ATP) are discriminated against against being denied the financial help needed to purchase their ESSENTIAL-For-LIFE non-supplemental anymore Vitamins, Minerals, d-Ribose needed for them to make the amount of energy (ATP) that their individual bodies are NOT able to make in sufficient quantities to meet their own body’s energy needs. I have even had my doctors petition 2 times to Medicaid & Medicare for my needed coverage of vitamins, minerals, & d-Ribose powder being in failure myself, my doctors have stated that these are all no longer just supplemental substances that are not necessary for life but they are rather essential medications needed now for me & for others who have Mitochondria failure. I am being denied my right, to life, liberty, & the pursuit of happiness because all my money goes to try to have enough energy to have a better life but I can only afford enough of what I need for me to be able to make enough energy (ATP) for me to be able to lay around on my bed for the majority of every day & night. Stop the injustice, call this condition what it is; Mitochondria Malfunction, or Mitochondria Failure depending on how severe their cell death & destruction has got from this occurring within each individual’s body! Then use the same description for failure that you’d use for any other organ in the body, just like I’ve shown you in the definition of heart failure as taken from https://tinyurl.com/n4tngoo

  17. My brothers had this disease for 12 years. I agree with this proposal.

  18. I was number 299 that agreed.

  19. Angela says:

    I agree with this proposal

  20. Eileen McDonald-Sayer says:

    I have had m.e SINCE 1980. The real me died then, I lost my career, friends self worth and so much more

  21. Donia says:

    Registered, agreed, and commented. Thank you SO MUCH ladies for not only doing this, but spreading the word about the need to read, agree and comment on the proposal. We need a change NOW or NIH and HHS will continue to just pay us lip service and not make any significant research progress…
    Mahalo nui loa from someone with Severe ME

  22. My husband and I “voted” and left comments – thank you SO MUCH for all your hard work on this impressive document, and for condensing things with links for us to make our voices heard, and have an easy way to share links with others to join with us!

  23. Petra says:

    I agree with this proposal.

    1. Were you able to follow the steps on the WHO website to show that you agree with the proposal?

      1. Barbara from Germany says:

        It was not quite easy, espacially for me as a German, but i managed to agree and comment. I was number 193, my husband 194. Thank you for doing all that for pwme around the world!

    2. Were you able to follow the steps on the WHO website to show that you agree with the proposal? The instructions are in the article with the links. It only takes about 5 minutes.

  24. Elizabeth Harris says:

    I agree with this proposal

    1. Were you able to follow the steps on the WHO website to show that you agree with the proposal?

    2. Were you able to follow the steps on the WHO website to show that you agree with the proposal? The instructions are in the article with the links. It only takes about 5 minutes.

  25. Jorge says:

    !!! The name should descreibe not just the fatigue but also the immune dusfuntion and other.
    !! CANIDS !! CRONIC ADQUIRED NEURO IMMUNE DISFUNTION SÍNDROME….
    So the world can understand that me/cfs its an immune adquiered syndrome disease…
    So this cover up that have keep Me/cfs in the shadow like a forgotten plague for decades can be finally expoused and accepted and see the way its..

  26. Karen Scott says:

    You should change step 3 above to “Click on “other disorders of the nervous system”. It shows that in the illustration, otherwise I wouldn’t have known what link to click on. Thank you for the work you are doing!

  27. Karen Scott says:

    You should change step 3 above to “Click on “other disorders of the nervous system”. It shows that in the illustration, otherwise I wouldn’t have known what link to click on.
    Also, you should add a step to click on the box on the right to bring up the “Complex Hierarchical Changes Proposal” (which at this time is at the top of a list of new proposals).
    Thank you for the work you are doing!

    1. Thanks, Karen. We updated the instructions in the article so that it’s more clear.

      1. Tessa says:

        If possible, please make the instructions clearer? I found some comments by Suzy when I clicked on “Other disorders of the nervous system” and then the box with speech bubbles because I couldn’t find anything else. The comments are from January. Are these what we’re meant to agree with? I’m not sure where the proposal is…

        1. Try these instructions, which I just updated:

          1. Register at this link. (Note: you may find that you can’t complete the registration form without naming an organisation to which you belong. You could consider registering as a #MEAction member or as member of a Facebook group.)

          2. You then need to click this link to access the system where the proposal will appear.

          3. Scroll down through the proposal to the bottom where you’ll see: “Agree” and “Disagree” buttons.

          Click “Agree.”

          4. There is also an “Add comment” button, where you can add a comment. You’ll see comments from other people there. While it is not essential to add a comment, it is a good idea as some of the “Agrees” have disappeared from the system (there may be a bug in the form; no comments have disappeared). Adding a simple comment like, “I agree with this proposal,” will ensure that your support remains visible.

  28. susanne hackstock-schollinz says:

    ich leide seit über zehn jahren an me/cfs und fibro

  29. Christopher says:

    My partner and myself both agreed and left comments. Thank you so much for all your hard work.

  30. Kevin griffin says:

    I have CFS/ME and agree with the proposal !

    1. Were you able to follow the steps via the link to show that you agree with the proposal?

  31. Sigrid Vaskinn says:

    “I agree with this proposal”

    1. Were you able to follow the steps via the link on the WHO website to show that you agree with the proposal?

  32. K says:

    Hi,
    I can’t get this to work. The second of the two links seems to be broken ? it says it redirects to many times and won’t load. Is there a different link?

  33. Carol Bloxsome says:

    I agree with this proposal

    1. Were you able to follow the steps on the WHO website to show that you agree with the proposal? The link is in the article.

  34. Ernie McGoran says:

    I agree. The classification is very important for medical care persons who may not be entirely familiar with the disease.

  35. Suzy Chapman says:

    Thank you #MEACTION for flagging up our proposal and circulating to your global network and supporters.

    I thought you would like to know that we will likely hit 400 “Agrees” tonight and have already received in the region of 300 comments, including around 20 comments from international patient organizations, with more in the pipeline.

    Here are some key links:

    Comments can only be accepted via the Beta “Proposal Mechanism” – so please don’t send comments directly to WHO or to ICD Revision.

    In order to read our proposal on the ICD-11 Beta platform or leave a comment, you will first need to register an account. You can register, if you wish, using an existing Facebook, Yahoo, Google or MS account).

    The registration page is here: http://bit.ly/ICD11Registrationpage

    If you are having problems negotiating the registration page, there is a short WHO tutorial in this video which should help: http://bit.ly/ICD11regtutorial

    Once you have registered and are still logged in, use this link to go straight to the page for our proposal: http://bit.ly/commentICD11

    The “Agree” button is located directly underneath the blue reference links at the end of our proposal and rationale text.

    If you would like to comment on our proposal, scroll right down to the end of the page. The “add new comment” button is located underneath the most recent comment.

    If you are commenting on behalf of an organization, please state the organization’s name and in what capacity at the end of your comment.

    You won’t be able to edit or delete your comment once it’s been submitted ‒ so you may want to prepare a draft, first. You can include references to papers, reports etc in support of your comments but you won’t be able to upload files ‒ and it’s a plain text field only.

    At the moment, it’s not clear what date comments on proposals will need to be received by in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. But we are recommending that comments are submitted within the next couple of weeks.

    On my Dx Revision Watch site, there is a Summary post with screenshots about the proposal here:
    http://bit.ly/ICD11proposal

    For ease of access, we’ve also put a copy of the full proposal and rationale in a PDF:
    http://bit.ly/2mQxWTS

    There is a one page “key points on current ICD-11 Beta proposals” PDF here: http://bit.ly/2oD51DA

    Hope these links will help,

    Suzy Chapman

  36. Suzy Chapman says:

    Should mention, also, that two people have told me that the ICD Beta interface for the buttons for clicking “Agree” wasn’t compatible with their iPhones.

    Suzy Chapman

  37. William Bloxsome says:

    I agree with this proposal.

    1. William,

      Were you able to register your agreement on the WHO site. It should only take 5 minutes if you don’t read the full proposal. (Note, you can scroll through the proposal – you don’t have to read it if you don’t have the energy.)

      1. Register at this link. (Note: you may find that you can’t complete the registration form without naming an organisation to which you belong. You could consider registering as a #MEAction member or as member of a Facebook group.)

      2. You then need to click this link to access the system where the proposal will appear.

      3. Scroll down through the proposal to the bottom where you’ll see: “Agree” and “Disagree” buttons.

      Click “Agree.”

      4. There is also an “Add comment” button, where you can add a comment. You’ll see comments from other people there. While it is not essential to add a comment, it is a good idea as some of the “Agrees” have disappeared from the system (there may be a bug in the form; no comments have disappeared). Adding a simple comment like, “I agree with this proposal,” will ensure that your support remains visible.

  38. Elizabeth Edwards says:

    Took a while to navigate their system/website.
    Agreed and commented. Also ‘agreed’ with many of the other comments there. I think we were up to around 430. No ‘disagrees’ so far! 🙂

  39. Suzy Chapman says:

    I have prepared a Q & A document here in PDF format:

    Q & A version 1, April 2017

    Proposal for the ICD-10 G93.3 legacy terms for ICD-11, submitted by Suzy Chapman and Mary Dimmock on March 27, 2017

    PDF: http://bit.ly/Proposal111QA

    Questions covered in Version 1:

    Q1: Your proposal for ICD-11 does not recommend retiring CFS. Why is that?
    Q2: Are PVFS, (Benign) ME and CFS classified the same across all versions of ICD-10?
    Q3: How is ICD Revision proposing to classify the G93.3 legacy terms?
    Q4: Is there any proposal to classify the terms under Mental or behavioural disorders?
    Q5: Will ICD-11 look and function differently to ICD-10?
    Q6: What is the implementation date for ICD-11?
    Q7: Is ICD-11’s proposed new category “Bodily distress disorder” the same as Fink’s “Bodily distress syndrome”?
    Q8: Where can I view the Beta draft and comment on your proposal?

  40. Suzy Chapman says:

    Our Proposal and Rationale was prepared specifically for submission to ICD Revision, the ICD-11 Joint Task Force, the Topic Advisory Group for Neurology and the WHO classification experts. It is a formal, fully referenced document and not a quick read.

    If you aren’t able to read the entire document, there is a short summary post here on my Dx Revision Watch website.

    This stab points our key recommendations and is also illustrated with screenshots and gives directions for commenting (also with screenshots).

    A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

    http://bit.ly/ICD11proposal

  41. Sean Kirby says:

    Done.

    I second the recommendation to separately draft any comment before pasting it into the comment box on the WHO/ICD page. That page ate my comment without warning before I had finished it, then told me it had been posted, but it doesn’t seem to be appearing on the page. Will check and try again later.

    Huge thanks to Suzy Chapman and Mary Dimmock, and anybody who helped them, for their extraordinary sustained efforts on this critical issue. 🙂

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