What we're not being told about ME - UnHerd (Tom Chivers)

There is no specific code for "chronic fatigue" in ICD-10 but I'd like to see NHS Digital insert the term "chronic fatigue" into this caution note for coders in the annual National Clinical Coding Standards ICD-10 5th Edition handbook.



Edited to add source of caution note:

Page 84: National Clinical Coding Standards ICD-10 5th Edition (2021)
https://classbrowser.nhs.uk/ref_books/ICD-10_2021_5th_Ed_NCCS.pdf

 

I wonder how many patients who have been told they have 'Chronic Fatigue Syndrome' by a doctor (in the UK) have actually been given the F48.0 code on there records?

Because of what has happened with the NICE guidelines I have brought up my ME (in relation to the MEAction petition) for the first time on other non-ME forums. It is becoming apparent to me that people with other chronic illnesses have subsequently had a 'CFS' diagnosis added to their list of other medical conditions (e.g. fibro, hypermobility, POTS) because of their ongoing chronic fatigue, and are perfectly happy with the label 'CFS' (as opposed to ME) because they feel the name describes their condition. But I suspect few of them have enquired into how the 'CFS' has been coded by their doctor.

 

I've had several patients contact me over the years to say that when they finally obtained copies of their medical records, they found they had been assigned F48.0, or one of the F45.x Somatoform disorder codes, and in one case, both F48.0 and G93.3.

A coder I know has said that in their experience F48.0 is not that common a code to be recorded and more likely to be coded to the General symptoms and signs code: R53, if incorrectly recorded.

 

It will be a few years before NHS England is ready to migrate from ICD-10 to ICD-11, but when it does implement ICD-11, there will be no Neurasthenia or Somatoform disorders as these have been subsumed and replaced by the new 6C20 Bodily distress disorder category, for which exclusions for all three 8E49 terms have been secured.

For ICD-11, there is no Malaise and fatigue. This term has been replaced with MG22 Fatigue for which, again, exclusions for all three 8E49 terms have been secured, and with a reciprocal exclusion under 8E49 for MG22 Fatigue.

 

I was thinking in terms of their doctors purposely recording them with a different code than G93.3 because of their 'chronic fatigue' symptoms, but then muddying things in the patient's mind by referring to it as 'CFS' during the consultation. From discussions I've had, some of these patients who have been told they have 'CFS' have no idea what PEM is, what they describe is post exertional fatigue inline with the severity of their other medical conditions. They do not describe the nausea, sick or poisoned feeling, or symptom exacerbation we understand as PEM.

 

Thank you again for you hard work over the years on this.

 

Thank you, Simbindi.

 

I don't know any numbers, sorry. Both CFS and ME crop up fairly frequently on the thyroid forum I read, and I've noticed that more and more people with thyroid disease are saying that they have been diagnosed with CFS. Far fewer say they have been diagnosed with ME, and those who have been diagnosed with ME have had the diagnosis far longer than the people with the CFS diagnosis.

There have been a few people who have claimed they recovered from their CFS, ME, Fibromyalgia etc when they decided to treat themselves with thyroid hormones, and they treat themselves according to the levels of actual thyroid hormones (Free T3 and Free T4) and not TSH at all. There is an assumption in thyroid treatment amongst endocrinologists and GPs that TSH is a perfect measure. It can never be wrong and never misleading and is always perfect.

I read a post on that forum recently in which a woman without a thyroid was going to have her Levo dose reduced to 50mcg per day, which would eventually drive her into myxoedema coma, in my opinion. She will certainly end up severely disabled by this stupid GP of hers who just keeps repeating that TSH is all that counts.

 

Because of the current NICE Guideline (2007 ) I would think it highly unlikely that any patient has recently been diagnosed with M.E. in England @Arnie Pye

The Lead GP in my practice still calls this condition ‘chronic fatigue’ , although to be fair, he talked with me about the Group 6 issue and, after a full discussion, he coded me into Group 6 as I requested.

eta for clarity

 

x 3 @Dx Revision Watch

 

Years ago, a woman who had fibromyalgia told me she was much worse of than me because she had CFS as a part of her illness (I was in a wheelchair and she was walking fine).

There are a worrying number of papers coming out which describe CFS as part of other diseases, many of which say the patients had "PEM"

Then there is the use of CFS to mean fatigue and fibromyalgia to mean pain so discrete diseases are reduced to symptoms.

When the BPS claimed ME and called it CFS it was because they believed or professed to believe that all fatigue was a simple spectrum. Therefore it was valid to look for ways to treat mild fatigue and apply it it to sever fatigue for instance. It was said they were lumpers of disease as opposed to splittters of diseases. They have never wavered in this. FND and BDD are the ultimate expression of this lumping and will carry on to meet the 70s view that our bodies are perfect and we only get sick because our minds make us that way.

Yet we will never be understood or get a treatment until we have medics and researchers who understand what is broken in the body to give us the unique symptoms of ME. A cold and cancer will both make you fatigued but the cause of a cold is very different from that of cancer even if you found a cure for fatigue.

We have to demand a proper diagnosis of our disease. The name is not so important as the cause and unique symptoms. To not do so because we do not want to leave anyone behind or leave anyone without care does no one any good. I have often thought they will find a diagnostic test and it will turn out I don't have ME but then I can start getting together with people who do share my symptoms and find a cause for them.

There has been too much neglect over the years and at the very least we need to start grouping people by symptoms. There are many types of muscular dystrophy and motor neurone disease, MS, diabetes. We need the same for ME/CFS.