Turning a Corner in ME/CFS Research, 2021, Pheby et al

Abstract
This collection of research papers addresses fundamental questions concerning the nature of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), the problem of disbelief and lack of knowledge and understanding of the condition among many doctors and the origins of this problem, and its impact on patients and their families.

We report briefly the growing knowledge of the underlying pathological processes in ME/CFS, and the development of new organizations, including Doctors with ME, the US ME/CFS Clinical Coalition and EUROMENE, to address aspects of the challenges posed by the illness. We discuss the implications of COVID-19, which has much in common with ME/CFS, with much overlap of symptoms, and propose a new taxonomic category, which we are terming post-active phase of infection syndromes (PAPIS) to include both.

This collection of papers includes a number of papers reporting similar serious impacts on the quality of life of patients and their families in various European countries. The advice of EUROMENE experts on diagnosis and management is included in the collection. We report this in light of guidance from other parts of the world, including the USA and Australia, and in the context of current difficulties in the UK over the promulgation of a revised guideline from the National Institute for Health and Care Excellence (NICE).

We also consider evidence on the cost-effectiveness of interventions for ME/CFS, and on the difficulties of determining the costs of care when a high proportion of people with ME/CFS are never diagnosed as such.

The Special Issue includes a paper which is a reminder of the importance of a person-centred approach to care by reviewing mind–body interventions.

Finally, another paper reviews the scope for prevention in minimizing the population burden of ME/CFS, and concludes that secondary prevention, through early detection and diagnosis, could be of value.

https://www.mdpi.com/1648-9144/57/10/1012

 

https://www.mdpi.com/1648-9144/57/10/1012

Turning a Corner in ME/CFS Research
by Derek F. H. Pheby, Kenneth J. Friedman, Modra Murovska, Pawel Zalewski

NCHS ICD-10-CM C & M Proposals meeting, September 2020:

Unofficial transcript from closing minutes of discussion of agenda topic item: Page 169: Postviral and other related syndromes

Meeting Day 2 Recording and slides:
https://cms.zoomgov.com/rec/share/U...-f-AqlwYh1NWPDVawjzC2CEUjxCg.yHF2Cy_7xX0LVdGW

Password: $E33^Cb@

Topic begins at: 04:22:25 ends at 04:40:38.

Dr Erica Remer
04:38:25 Erica Remer: I just wanted to make a comment, we do have to sort this out because this is one of those COVID 19, Long Covid things. So we need to make sure we sort of get this right and I'm trying to understand because when Tony [Fauci] talks about ME, CFS and he relates it to COVID but would that be under Postviral fatigue syndrome? I'm trying to figure out how this would fit in clinically.

Traci Ramirez (NCHS)
04:38:56: Right now we are...it's too soon to actually add that...there's still much...

Dr Erica Remer
04:39:13 No, I just want to make sure that we...that if people are using like if they're finding this Long Covid I want to make sure they know whether they're supposed to be documenting it and getting it into G93.31 or G93.32.

Traci Ramirez (NCHS)
04:39:29 Right right now there's so much work to be done on that. It's a little too soon to really say which one it would go under, at this point and we have been talking about it, but right now, I know, Dr Fauci - he talks about it - but there's still a lot of unknown.

Mary Dimmock (on behalf of IACFS/ME, SOLVE M.E., #MEAction and four additional US advocacy orgs)
04:39:55 Tracy could I add a comment to that?
The ME and CFS can follow both viral and postviral as we talked about and the category is being expanded to include that. If a patient is diagnosed with ME/CFS following any virus or any infection or any other reason they should get the code for ME/CFS and that doesn't mean you wouldn't have something else, but if they meet the criteria for this, they should have a code for it and that's why I want to get the tracking correct.

Traci Ramirez (NCHS)
04:40:32 Right Okay, thank you, Mary.


[Traci Ramirez wraps up discussion of agenda topic: Page 169: Postviral and other related syndromes and moves on to next item.

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SNOMED CT US Edition contains these Concept codes:

Post-acute COVID-19 (disorder)
SCTID: 1119303003

1119303003 | Post-acute COVID-19 (disorder) |

en Post-acute COVID-19 (disorder)
en Post-acute COVID-19
en Long COVID-19
en Long-haul COVID-19
en Symptoms attributed to SARS-CoV-2 infection that persist for more than four weeks following onset and with a negative infectious virus status.

and

Chronic post-COVID-19 syndrome (disorder)
SCTID: 1119304009

1119304009 | Chronic post-COVID-19 syndrome (disorder) |

en Chronic post-COVID-19 syndrome (disorder)
en Chronic post-COVID-19 syndrome
en Chronic COVID-19 syndrome
en Symptoms related to COVID-19 that persist more than 12 weeks following onset.



ICD-10-CM Tabular List FY 2022 release: Chapter 22: Page 1977

https://dxrevisionwatch.files.wordpress.com/2021/06/icd10cm-tabular-2022.pdf

contains these codes:

U09 Post COVID-19 condition
U09.9 Post COVID-19 condition, unspecified

Note: This code enables establishment of a link with COVID-19.
This code is not to be used in cases that are still presenting with active COVID-19. However, an exception is made in cases of re-infection with COVID-19, occurring with a condition related to prior COVID-19.

Post-acute sequela of COVID-19

Code first the specific condition related to COVID-19 if known, such as:
chronic respiratory failure (J96.1-)
loss of smell (R43.8)
loss of taste (R43.8)
multisystem inflammatory syndrome (M35.81)
pulmonary embolism (I26.-)
pulmonary fibrosis (J84.10)

 

Great article, that would be good to see propagated widely.

Unfortunately, they are (Gaffney, Devine etc).

Not of great importance, but they twice refer to the Royal Free outbreak as occurring in 1958. It was 1955, as per their references 2 and 3.