Can I change my GP record terminology (UK)?

[Kiristar]

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.
So
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.

 

[TigerLilea]

My doctor also uses the term CFS. I asked her about using ME and she said that they don't use it.

 

[CRG]

what does "xa01f" mean ?

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

 

[Kiristar]

My doctor also uses the term CFS. I asked her about using ME and she said that they don't use it.

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. "

 

[Adrian]

"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"

Its interesting that they have put the speciality under Rhumatology.

 

[Kiristar]

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

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.

 

[Jonathan Edwards]

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.

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.

 

[Kiristar]

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.

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...

 

[Jonathan Edwards]

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.

 

[Kiristar]

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.

 

[It's M.E. Linda]

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).

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

 

[John_Lobb]

Hi there,

I've been looking into this because of the recent government rhetoric on mental health claimants, campaign to end 'sick note culture' and intention to cut PIP payments. I've been wondering if ME was incorrectly classified as a mental health illness.

My diagnosis is currently "Chronic Fatigue Syndrome (CFS/ME) (Xa01F)" with the added words, "mild episode". However, this was back when I was indeed mild but my record has not been updated to show that I am now in the Moderate to Severe category as I have been for 4 years and am currently housebound for the majority of the time.

In an ideal world I would like my diagnosis to be updated according to the updated NICE guidance to state "Myalgic Encephalomyelitis (ME/CFS)" - "Moderate to Severe".

DecodeME has this document with the Primary Care Codes for Diagnosis Associated with ME, CFS or Post Viral Fatigue Syndrome, which I have attached three relevant pages of and the source link is below.

" Table 1 Primary care codes for diagnoses associated with ME, CFS or Post-viral fatigue syndrome

F03y. Other causes of encephalitis (& [myalgic encephalomyelitis] or [encephalomyelitis NOS]) Other causes of encephalitis Encephalomyelitis NOS Myalgic encephalomyelitis

XE17Z Postinfective encephalitis (& [myalgic encephalitis] or [myalgic encephalomyelitis]) Post-infectious encephalitis Post-infectious encephalitis Myalgic encephalitis Postinfective encephalitis

XE17b Encephalitis/myelitis: [NOS] or [encephalomyelitis & (myalgic)] Encephalomyelitis Myalgic encephalomyelitis Encephalitis/myelitis NOS

Xa01F Chronic fatigue syndrome Myalgic encephalomyelitis ME Myalgic encephalomyelitis Myalgic encephalomyelitis syndrome Postviral fatigue syndrome PVFS - Postviral fatigue syndrome CFS - Chronic fatigue syndrome

.F122 Postinfective encephalitis (& [myalgic encephalitis] or [myalgic encephalomyelitis]) Post-infectious encephalitis Myalgic encephalomyelitis Myalgic encephalitis Postinfective encephalitis

.F38. Chronic fatigue syndrome Myalgic encephalomyelitis ME - Myalgic encephalomyelitis Myalgic encephalomyelitis syndrome Postviral fatigue syndrome PVFS - Postviral fatigue syndrome CFS - Chronic fatigue syndrome

F286. Chronic fatigue syndrome Myalgic encephalomyelitis Myalgic encephalomyelitis ME - Myalgic encephalomyelitis Myalgic encephalomyelitis syndrome Postviral fatigue syndrome PVFS - Postviral fatigue syndrome PVFS - Postviral fatigue syndrome CFS - Chronic fatigue syndrome

X75s8 Chronic fatigue syndrome Myalgic encephalomyelitis ME - Myalgic encephalomyelitis Myalgic encephalomyelitis syndrome Postviral fatigue syndrome PVFS - Postviral fatigue syndrome CFS - Chronic fatigue syndrome

XM06p Chronic fatigue syndrome Myalgic encephalomyelitis ME Myalgic encephalomyelitis Myalgic encephalomyelitis syndrome Postviral fatigue syndrome PVFS - Postviral fatigue syndrome CFS - Chronic fatigue syndrome

mild/mod/sev

F2860 Mild chronic fatigue syndrome

F2861 Moderate chronic fatigue syndrome

F2862 Severe chronic fatigue syndrome

XaPom Mild chronic fatigue syndrome

XaPon Moderate chronic fatigue syndrome

XaPoo Severe chronic fatigue syndrome

Activity management
XaPeC Activity management for chronic fatigue syndrome Activity management for myalgic encephalopathy Actvty managm for myalg enceph

.8Q1. Activity management for chronic fatigue syndrome Activity management for myalgic encephalopathy Actvty managm for myalg enceph

8Q1.. Activity management for chronic fatigue syndrome Activity management for myalgic encephalopathy Actvty managm for myalg enceph

Referrals
XaR7C Referral to chronic fatigue syndrome specialist team Referral to myalgic encephalomyelitis specialist team

XaRAz Referral for chronic fatigue syndrome activity management Referral for myalgic encephalopathy activity management

8HkW. Referral to chronic fatigue syndrome specialist team Referral to myalgic encephalomyelitis specialist team"

Hopefully someone finds this interesting!

https://dxrevisionwatch.com/2015/12/28/changes-to-snomed-ct-and-read-codes-ctv3-for-cfs-me-and-pvfs/

https://www.decodeme.org.uk/app/uploads/2023/03/DecodeME-GWAS-Analysis-Plan-v1.pdf

 

[Kiristar]

I wrote a letter to my GP and got mine successfully upgraded from the general code Xa01F to XaPoo to reflect my severe status. It's now on my summary record. Was helpful for PIP renewal.

 

[John_Lobb]

I wrote a letter to my GP and got mine successfully upgraded from the general code Xa01F to XaPoo to reflect my severe status. It's now on my summary record. Was helpful for PIP renewal.

Thank you for the update. I will try the same I think. Did you meet any resistance in getting this change? Do you have any advice?

 

[Kiristar]

I was expecting problems as my GP hasn't been helpful but no, it went through very smoothly and quickly with no queries or push back.

If you inbox me I can if you like try to dig out my letter next time I make it to my PC if you think the wording may be helpful ?

 

[Maat]

Its interesting that they have put the speciality under Rhumatology.

Fascinating.

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

Can anyone let me know whether chronic fatigue syndrome and/or ME is listed under a Specialty in the ICD11?

 

[John_Lobb]

Fascinating.


Can anyone let me know whether chronic fatigue syndrome and/or ME is listed under a Specialty in the ICD11?

Hi Maat,

Let me know if this helps

ME Association:
https://meassociation.org.uk/medical-matters/items/pvfs-mecfs-long-covid/

"The World Health Organisation’s authoritative International Classification of Diseases (ICD-11 2022) recognises Post-Viral Fatigue Syndrome as the parent term in Section 8: Diseases of the Nervous System, Sub-section: other disorders of the nervous system: 8E49.

Both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are included terms in this category, while ‘Fatigue’ is an exclusion and determined to be a general clinical symptom.

The NHS employs diagnostic codes based on the ICD in its SNOMED-CT digital classification system and similarly recognises PVFS, ME and CFS as being neurological.

While SNOMED-CT has chosen to use ‘Chronic Fatigue Syndrome’ as the parent term, Post-Viral Fatigue Syndrome and Myalgic Encephalomyelitis or Myalgic Encephalopathy, can also be used on a patient’s medical record.

Additionally, the NHS system carries coding for the diagnosis of Post-acute Covid-19 or Long Covid-19 as ‘disorders following viral disease’."

ME Research UK on ICD Classification:
https://www.meresearch.org.uk/icd-classification/

ICD-11:
https://icd.who.int/browse/2024-01/mms/en#569175314

 

[Maat]

I don't know what to say @John_Lobb except thank you so much. Absolutely perfect!

ICD-11 for Mortality and Morbidity Statistics (who.int)

For 12 years I've been following 3 separate lines of investigation outside of ME/CFS to establish breaches of Article 12 right to health, by denying cilnical investigations of symptoms except for exclusionary blood tests, and ruling out other causes of fatigue, on the basis of MUS.

I can now finally finish my Timeline for the lawyers currently running at 44 pages on medical ethics, consent. human rights, institutional abuse and reputational damage to patients. That's just the last 22 years 'cause I don't want to overwhelm the lawyers at first contact.

I'm going to write this very quietly, as I don't want to raise anyone's hopes, and I am completely exhausted and emotional, but I think we may have just broken the Glass Cage(?) The glass cage | The BMJ , partly due to the pandemic, my low ferritin level of 6, secondary polycythaemia of unknown origin, Japanese researchers, adolescent psoriasis and sjorgren's syndrome.

 

[John_Lobb]

Small update: I managed to get XaPoo added to my medical record! I now need to get it added to my 'Summary Care Record'. For some reason, despite my ME being my only long term debilitating condition it is not on my Summary Care record. It is frustrating that CFS is the only term referenced in SNOMED, I tried to get my GP to write ME instead but to no avail. I've also recently come across "Reasonable Adjustment Flags" (RAF) for Summary care records and will look into adding one to my summary care record to make doctors aware of my hypersensitivities to light, sound etc.

Codes extra info recently stumbled across:
I recently did a ("XaPoo" SNOMED) Google and found this spreadsheet and I thought I'd add it here if it might have some useful info. I'm not entirely sure what medrxiv is or what this data is from/for, but here it is: Supplementary Data 1medRxivhttps://www.medrxiv.org › embed › media-1 (search XaPoo on sheet 1 if looking at original spreadsheet)

Here's the data in plain text:
Phecode: 798.1
Disease: Chronic fatigue syndrome
Category: Symptoms
Sex: Both

All (Survival): 3348
Primary care (Survival): 2327
Secondary care (Survival): 1021
Controls (Survival): 435569
All (Genetic): 3418
Primary care (Genetic): 2312
Secondary care (Genetic): 1106
Controls (Genetic): 438253

ICD-10: G933
Read2: F286. | F2860
CTV3: Xa01F | XaPom | XaPon | XaPoo
SNOMED-CT: 51771007 | 377181000000104 | 377171000000101 | 377161000000108

Screenshot:


So far this S4ME thread is the best resource I've found anywhere for info regarding SNOMED and codes.

I also found this Twitter thread useful: https://twitter.com/user/status/1635563935372828673


Hopefully someone finds this useful