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Can I change my GP record terminology (UK)?

Discussion in 'Diagnostic Criteria and Naming Discussions' started by Kiristar, Oct 11, 2022.

  1. Kiristar

    Kiristar Established Member (Voting Rights)

    I got my patient summary today and rather depressingly it states I have "chronic fatigue syndrome" (xa01f). Which the more I learn about the history of the term the more I find outright offensive.
    1 what does "xa01f" mean ? and
    2 can I get it changed on my patient record to read severe ME/CFS or severe PVFS which would be more accurate as more specific to my viral onset and less offensive and stigmatising? Has anyone managed to.?
    3. Any progress on getting the Snowmed parent term altered from CFS to ME/CFS or else PVFS conform to latest WHO classification?

    I'm frustrated over this mostly because my severe ME/CFS keeps being discounted and overlooked by the GPs. Eg I say I'm homebound but it got logged as homebound due to my POTS not due to my ME and same with symptoms. If it were just POTS I'd probably still be able to get out in my wheelchair, it's the severe CFS and the CFS in combination with the POTS that's the problem. And the POTS is anyway secondary to the ME and came as it progressed.
    Trouble is they believed in POTS cos its measurable (ironically my pots diagnosis wasn't even confirmed by the ttt as I was in such a severe pem from the travel on the day). But my ME diagnosis is a cast iron "classic" case diagnosed by a specialist ME service. It's such a ridiculous farcical situation.
    It just keeps happening and I'm just so fed up now after years of what is essentially discrimination over it, its finally really getting to me.
    Thanks for letting me rant even if there is no solution. My husband doesn't get why it drives my potty.
    livinglighter, Ariel, Hutan and 9 others like this.
  2. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Metro Vancouver, BC - Canada
    My doctor also uses the term CFS. I asked her about using ME and she said that they don't use it.
  3. CRG

    CRG Senior Member (Voting Rights)

    That's the SNOWMED code for CFS - https://snomedbrowser.com/Codes/Details/52702003

    For explanation of (UK) SNOWMED https://digital.nhs.uk/services/terminology-and-classifications/snomed-ct

    You'll see on the CFS code page that the ICD.10 equivalent is G.933 which is listed under diseases of the nervous system, the headline is Post Vital Syndrome but also includes the note:

    "The ICD code G933 is used to code Chronic fatigue syndrome
    Chronic fatigue syndrome (CFS) is a complex medical condition, characterized by long-term fatigue and other symptoms. These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities. CFS may also be referred to as systemic exertion intolerance disease (SEID), myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), or several other terms. Quality of life of persons with CFS can be extremely compromised.

    Specialty: Rheumatology"

    Assuming you are in the UK, then there really isn't room for your GP to code your illness any differently - and it would be unlikely to be helpful to you if they did. The NICE guidance published last year does use ME/CFS and if you are asking your GP for letters, referrals etc then you could refer them to the Guidance and ask they use ME/CFS rather than CFS. https://www.nice.org.uk/guidance/ng206

    The NICE guidance is a huge step forward - the point is to have the illness described in ways that both science and patients understand it, and not worry too much what the current naming convention is, as long as the code matches the right description of the illness, then we are going in the right direction
    Ariel, Kiristar, RedFox and 8 others like this.
  4. Kiristar

    Kiristar Established Member (Voting Rights)

    I found a bit of info on the MEA site that appeared to suggest it could now also be coded as ME/CFS or PVFS in UK, and that you could get your severity grade coded too, (but all as child categories of CFS). So I wondered if anyone has got an alteration. But it's possible I've misunderstood what's diagnostically codeable in Snowmed vs what's just loggable as text on a patient record.
    I'd love to know why it is not matching WHO and why they would refuse to match the new NICE terminology of ME/CFS now that's out.

    "– ME/CFS is classified by WHO ICD-11 as a Post-Viral Fatigue Syndrome (8E-49) and defined as a disorder of the nervous system i.e., neurological. This is accepted by the NHS in each of the devolved countries of the UK and by the UK Government.
    – The NHS digital classification system (SNOMED-CT) also recognises this classification and patients can be recorded as having mild, moderate, or severe ME/CFS on their patient records. "
  5. Adrian

    Adrian Administrator Staff Member


    Its interesting that they have put the speciality under Rhumatology.
    livinglighter, Lilas, Ariel and 4 others like this.
  6. Kiristar

    Kiristar Established Member (Voting Rights)

    Hi and many thanks for explaining.
    Interesting WHO see it as fitting under Rheumatology despite classing it as a neurological condition. I had an awful gaslighting experience under neuro so would lovely if it got moved there in the UK someday. I never bothered trying Rheuma, I figured they'd just label me as having fibro and I didn't see the point of acquiring yet another contested illness label.
    I do get what you say things are moving forwards research wise which is true at a macro level however glacially and its great if the name doesn't bother you. But I am having increasing trouble getting my condition taken serious at my GP which I the name contributes towards and I genuinely find it personally offensive and denigrating. No one describes dementia patients as having chronical forgetfulness syndrome or MS/ parkinsons as chronically shakiness syndrome.

    I know there were moves to address snowmed issues and I was just hoping that perhaps that had been done by now following the NICE move to use ME/CFS. Or I wondered seeing as I'd been coded at an much earlier time things had changed already. I guess I will have to shine on.

    I see there is a severe ME category I guess I could ask to get that coded as being more accurate description of my state, which would be a start.
    alktipping and Peter Trewhitt like this.
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    It is likely that medics will take CFS more seriously than ME. ME can very easily be seen as a supposed brain disease that never actually existed - and not without reason. Chronic fatigue syndrome describes whatever it is that some people who exist suffer from.

    The advantage of ME/CFS to my mind is that it is a name that implies an understanding of the shortcomings of both names and some real knowledge of what is known and what is not known about the condition.
    Wits_End, bobbler, alktipping and 8 others like this.
  8. Kiristar

    Kiristar Established Member (Voting Rights)

    Interesting you say that. I'm sure you'll know much better than me about any distinctions between the two made within the medical profession. I'd thought from accounts I read that historically way back the term benign ME was used and that it was originally considered a "valid" disease like any other - up until the Beard and Mceavy thesis upended things. But I guess I probably got the wrong end of the stick somehow. Easily done with brainfog and such a complex story.
    I know a medical dispute developed around the "- -myelitis" bit, but as a disease name my impression had been that thereafter they were both used (for the last couple of decades ish) basically synonymously for the same condition but that it got switched round to CFS as the official medical term as that was the psychosomatised nomenclature for it in order to kind of devalidate it from having a biomedically based latin name of ME. So it seemed to me to have turned into a situation where those who maintained it was biomedical like Dr Shepherd etc use the Latin tern and call it ME and those who consider it psychological and wish to disparage it call it CFS. I guess I've misunderstood the whole sorry saga somehow or other so clarification always welcome. But that perception of how it's played out is why I find CFS so denigrating personally. Certainly among non medical people when I've used the term CFS it was immediately not really seen as serious because of the automatic comparison to normal tiredness, but if you use the medical term ME they take it as some serious illness. I know it's a bit pointless to feel like that about it but I still do.
    None of which is to to diminish psychological illness of course which I experienced at one time due to life circumstances, (I get double bubble stigmatisation medically because of that history) but the two were very dinguishable and behaved differently symptomatically and - for me experientially they were nothing like each other.
    Anyway after repeated gaslighting the less I have to do with medical people the better as interacting with them has become a bit of a trauma but as I'm now so severe it's become harder to avoid.
    I gather the ME Association is working on the terminology thing post NICE, they tell me they're aware and are "in conversation" about it, though I'm not sure with whom...
    alktipping, Peter Trewhitt and Wonko like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    I think the story has been distorted in various ways @Kiristar.
    Over the last forty odd years most doctors have thought of ME as the name for what might have been some special neurological epidemic illness at the Royal Free years ago but nobody is quite sure quite what. The use of the term, as Ramsay proposed, for a longer term illness was never taken very seriously by the medical profession. I doubt McEvedy and Beard changed that much.

    In contrast Chronic Fatigue Syndrome has been accepted by most doctors as covering the undoubted existence of chronic fatiguing illness. The problem with it is that it does not recognised the particular pattern of illness that Ramsay had identified reasonably well, with PEM and fatiguability.

    As I said above, I think the sensible thing is to use ME/CFS because it carries the implication that this is a real and specific category of illness but acknowledges that ME was not that good a name.

    Some of the charities, and I think that includes Forward ME, would like to stick to ME and not mention CFS. I see that is a bad move in communication terms because ME on its own is associated in doctors' minds with a speculative diagnosis that is used by the general public to mean all sorts of things. And very often it just means 'chronic fatigue' or 'tired all the time' so is no better than that.
    Last edited: Oct 13, 2022
    Wits_End, RedFox, alktipping and 7 others like this.
  10. Kiristar

    Kiristar Established Member (Voting Rights)

    Thanks for explaining that. I was very young in the eighties so wasn't even aware of the condition by either name. It's funny how words take on a life of their own and evolve in meaning and implications over time isn't it. Sick used to mean ill and now means cool, black now needs to be people of colour to be inclusive etc.
    I agree as you say that ME/CFS is the only practical option for now but, if that's the case with poor acceptance of ME too then I pray for a day where a totally new term reflecting the true biomedical causation can be coined and both toxic historic terms can be ditched altogether.
    From my own experience I'll always find the term chronic fatigue syndrome deeply offensive now personally because that's what's governed my experience of discrimination and mistreatment. I'll never find it acceptable. Roll on decode ME hey.
    alktipping, Peter Trewhitt and Ariel like this.
  11. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    I have been reading about coding/SNOMED for a while (and struggle badly because it is so complicated to get the hang of).

    However, back in May, I was wandering the internet and discovered further details of these CTV3 codes
    (click to view, click on right arrow to view codes for moderate and severe CFS)

    Could you @Kiristar /a carer speak with your GP to discuss NICE Guideline NG206 and request that your condition now be adjusted to SevereME - Code “XaPoo” ?

    I did a twitter thread the other day, where I was pondering why NHS Digital (NHS England/DHSC/any of them) seem to find it so very difficult to calculate a more up-to-date figure of PwME in the U.K., when they should be able to use their own coding system?


    ETA - amend spelling error

    Attached Files:

    Last edited: Nov 5, 2022

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