ME, CFS and CF - Whats the difference?

[Frickly]

This was posted on facebook by the Blue Ribbon Campaign for ME/CFS. I know there is alot of discussion about the differences in ME and CFS. Some thinking these are different illness. I really like this explanation of ME/CFS and just wanted to repost it.

"M.E. and CFS are indexed together by the World Health Organization in the ICD in the Neurological chapter at G93.3. This means they are the same disease. Separating them is a matter of semantics to diminish the disease the eyes of the public and medical community. This is what we are fighting against. "

"Anyone who tells you ME/CFS is a mental disorder is not following WHO guidelines and you need to ask yourself why they are doing that."

http://tinyurl.com/olfzom <---video explains

"ME and CFS are the same illness. M.E. does not exist in the U.S. The psychiatric lobby is trying to make M.E./CFS into chronic fatigue and have it classified as a mental disorder. Meanwhile, people are dying from lack of research and the practices of the psychiatric lobby. Chronic Fatigue and Chronic Fatigue Syndrome are two separate illnesses. CFS is classified with M.E. for a reason."

Definition from http://www.nsnet.org/idacan/pain.html

"The term Chronic Fatigue Syndrome is used primarily in North America. Myalgic Encephalomyelitis (ME) is used in most other countries. It can be best understood when broken down into its individual parts. As you look at the term it becomes clear that the emphasis is on the central nervous system.

My - muscle
algic - pain
encephalo - brain
myel - spinal cord
itis - inflammation

"Neither term is satisfactory. People with CFS have many other symptoms contributing to their disability besides fatigue. "

"CFS/ME affects thousands of men, women and children. The majority of sufferers seem to be women between the ages of 30 and 50. Generally these people are high functioning, productive individuals. There are some differences in how children of different age groups are affected by the illness."

"Adults generally fall into one of the following categories. Twenty-five percent are bedridden, 40% are able to maintain part-time work, 35% work full-time, and 50% are disabled and can not work for varying periods of time."

- 28 million people around the world have this disease.
- We are trying to get the message sent across the world that ME/CFS is real, and deserves as much attention as other diseases.
- All we ask right now is that you put a blue ribbon in your profile pictures across the internet and invite your friends to do so.
- Your simple act of replacing your picture in all your profiles on the internet with an ME/CFS badge will indicate to the world that it is time for the silence to end, and that you recognize that something must be done for the people suffering in silence from this devastating disease.
- Go Blue and show the World that people with ME/CFS are visible.

Photos you can upload to your Facebook from the media section or by going to http://www.BlueRibbonCampaignForME.Org

1. Save graphic by clicking on graphic.
2. Save image as to your computer
3. Upload into your facebook, twitter, and other Social Media to show you stand in solidarity with us.

We appreciate your help in building the Blue Ribbon Campaign for ME/CFS.
Donations Go To
WHITTEMORE PETERSON INSTITUTE FORNEURO IMMUNE DISEASES
A 501(c)(3) nonprofit

 

[lansbergen]

"Adults generally fall into one of the following categories. Twenty-five percent are bedridden, 40% are able to maintain part-time work, 35% work full-time, and 50% are disabled and can not work for varying periods of time."

I do not understand this. 25%+40%+35%+50%=150%. How can it be more than 100%?

 

[Dr. Yes]

Hi Frickly! :Retro smile:

Just a clarification:

"M.E. and CFS are indexed together by the World Health Organization in the ICD in the Neurological chapter at G93.3. This means they are the same disease.

In the US, they are not indexed together by our version of the ICD (in fact, we don't even have ME in our current version, and CFS is not in the G93.3). In the general WHO version, CFS is in an index and if you look it up you are referred to G93.3, though it's not entirely clear (as Suzy aka ME Agenda has explained) what that really means...

In the upcoming American version, they will in fact be completely separated, and "CFS NOS" will be specifically excluded from consideration as a neurological disease! To my knowledge, only the Canadian version will list them together in G93.3. Even that does not necessarily mean that the WHO considers them to be the same disease.

"Anyone who tells you ME/CFS is a mental disorder is not following WHO guidelines and you need to ask yourself why they are doing that."

That part is certainly true! The WHO's own regulations do not allow a physical disease to also be classified as a psychiatric one - and vice versa.

 

[Dx Revision Watch]

...In the general WHO version, CFS is in an index and if you look it up you are referred to G93.3, though it's not entirely clear (as Suzy aka ME Agenda has explained) what that really means...

The proposed Chapters and codes for PVFS, (B)ME and Chronic fatigue syndrome for the forthcoming US Clinical Modification of ICD-10 (known as ICD-10-CM and scheduled for implementation in October 2013) are set out here:

http://www.forums.aboutmecfs.org/sh...perate-illnesses&p=79932&viewfull=1#post79932

in Post #196

Current classification and codings for PVFS, (B)ME and Chronic fatigue syndrome in ICD-10 version for 2007 are set out here, on my site:

http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

and I shall be updating on the latest re the Alpha Draft for ICD-11 in the next couple of weeks.

Suzy

 

[IamME]

Definition from http://www.nsnet.org/idacan/pain.html
"Neither term is satisfactory. ..."

"Neither term is satisfactory" re: M.E., Drivel. This sort of statement is made by proponents of the status quo and promoters of the fatigue paradigm.

CFS is not the name of a single disease, it's a bogus smokescreen construct created by the CDC, Insurance companies and psychs to (largely successfully) destroy an actual, existing disease, M.E., wherever it's used. It serves the psychologisers brilliantly, who've gone on record admitting it's their "trojan horse". CFS obfuscates and misinforms and is meaningless to the extent it means whatever the clinician/researcher wants it to mean. The Canadian definition is in essence an ME definition with the phrase "CFS" and fatigue tacked on in the hope that would sweeten it for CFS clinicians. The de facto CFS is mostly Fukuda/Reeves, Oxford or some researcher's pet variant though, the definitions of which bear virtually no resemblence to ME whatsoever. The consequence of that being masses of "CFS" research is actually on some other illness(es).

It's incorrect to suggest there was nothing there for Americans to use, there was: epidemic neuromyasthenia. But really, there's no reason why the same advocacy tactics need to be used in each country. Go and knock yourself out with "chronic fatigue syndrome is not about chronic fatigue" in the US if you see that the only way. We in the UK would benefit far more from promoting ME (and/or XAND if that comes to pass) since CFS has been 101% damaging and the fallout entirely negative over here. It's wiped the ME evidence base entirely clean, brainwashed wavering doctors and rather than only having to fight a positive, the recognition of ME, we're having to fight against a negative, its replacement with "chronic fatigue" and toxic associations with "tired all the time", burnout, neurasthenia, all the crap. Perhaps CFS has differing, better cultural implications in the US (I doubt it much) but here it ensures the ME community has no friends. CFS allows for tactical dissembling and concealment by the CBT school while arguing the case for ME here forces them into the open ground. The only reason for selectively supporting use of "CFS" in the UK is that some good ME research is done despite using the wrong terminology and in order to rescue any unwitting pwME who've been diagnosed with the CFS wastebasket.

 

[HopingSince88]

"Adults generally fall into one of the following categories. Twenty-five percent are bedridden, 40% are able to maintain part-time work, 35% work full-time, and 50% are disabled and can not work for varying periods of time."

I do not understand this. 25%+40%+35%+50%=150%. How can it be more than 100%?

I think they mean 25%+40%+35%+50%=100% and that at sometime during their illness 50% are disabled. ?

 

[Mithriel]

Myalgic encephalomyelitis is an eminently satisfactory name.

My - muscle
algic - pain
encephalo - brain
myel - spinal cord
itis - inflammation

This is exactly what I have and is exactly what I was diagnosed with. The inflammation is not so apparent after the illness becomes chronic but it is there if anyone bothers to look for it.

I don't think that CFS has ever been considered as a neurological disease. It was tagged onto ME as an alternative name along wiht Post Viral Fatigue Syndrome as a sort of after thought. I do not know who was responsible. The CDC maintain the two diseases are different.

In the UK, the "official" name from NICE is CFS/ME. Activists use it the other way round as ME/CFS.

No one has been well served by "CFS" except those who profit from our illness.

Nowadays, many people are told they have CFS who do not have myalgic encephalomyelitis but simply have fatigue.

Mithriel

 

[Tammie]

"Adults generally fall into one of the following categories. Twenty-five percent are bedridden, 40% are able to maintain part-time work, 35% work full-time, and 50% are disabled and can not work for varying periods of time."

I do not understand this. 25%+40%+35%+50%=150%. How can it be more than 100%?

I think they mean 25%+40%+35%+50%=100% and that at sometime during their illness 50% are disabled. ?

that would still be weird, bc there are people who are not bedriddden, but are unable to work....and if you look at the 25%, 40%, & 35% stats quoted (that would add up to 100%), they apply to people who are bedridden, working part time or working full time - there is no category in there for people who are not bedridden but still cannot work (that's the disabled category which pushed the total up to 150%)

 

[Mithriel]

I am a member of the 25% group for the severely affected so named because 25% are usually considered to be house bound or bed bound.

I think the actual 25% figure was first used by Melvin Ramsay, the expert from the Royal Free, who said that 25% recover within the first few years, 50% have a relapsing remitting course and 25% gradually deteriorate.

No one has ever considered 25% bed bound. I think that many people have times of being unable to do very much but that the ones who are severely limited and confined to bed for years are much less than a quarter thankfully. They lead a terrible existence.

Mithriel

 

[Dx Revision Watch]

May be of interest

http://www.co-cure.org/ICD_code.pdf

CDC document: A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases

(Note: the proposals for the coding of Chronic fatigue syndrome for the US Clinical Modification, ICD-10-CM, have since been superceded. See end of this page: http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/2/ )


A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases
Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards

March 2001

This document provides a summary of the classification of Chronic Fatigue Syndrome in the International Classification of Diseases, ninth and tenth revisions, and their clinical modifications.

ICD-9

The International Classification of Diseases, ninth revision (ICD-9), was published by the World Health Organization (WHO) in 1975. WHO did not make revisions to the classification between major updates, which usually occurred every ten years. The term chronic fatigue syndrome did not have a specific code in ICD-9 nor did the term appear in the alphabetic index of ICD-9. The only entry in the alphabetic index of the ICD-9 was Syndrome, fatigue and referenced code 300.5, Neurasthenia, a condition classified in Chapter V, Mental disorders.

The term benign myalgic encephalomyelitis appears in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term postviral syndrome was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions.

It should be noted that while many terms are listed in the alphabetic index, all of the terms may not appear in the tabular list of the classification. This is a standard convention of the ICD.

ICD-9-CM

For morbidity data the United States uses the International Classification of Diseases, ninth revision, clinical modification (ICD-9-CM), a clinical modification of ICD-9. ICD-9-CM has been used in the United States since 1979 and has an annual update process that has been in place since 1985. The update process begins with the convening of the public forum, ICD-9-CM Coordination and Maintenance Committee. Proposals to modify the classification are presented and discussed during these public meetings. Information about future meetings of the ICD-9-CM Coordination and Maintenance Committee may be found on the NCHS website at

http://www.cdc.gov/nchs/about/otheract/icd9/maint/maint.htm

In 1990, a recommendation to create a specific code for chronic fatigue syndrome was presented. At that time, there was no consensus about the etiology of the syndrome, which is needed to accurately classify a condition in the ICD. A new code could not be created because of this problem; however, a modification to the alphabetic index was made to direct users of the classification to code 780.7, Malaise and fatigue. This is the same code used to identify cases of postviral syndrome. This change became effective October 1, 1991.

In 1998, subcategory 780.7 was expanded to include new five-digit codes. The new codes created included code 780.71, Chronic fatigue syndrome. The placement of this condition in this category was consistent with the WHO version of ICD-9 and with its placement within ICD-9-CM.

ICD-10

WHO published ICD-10 in 1992 and included many modifications, among them relocation of some diagnoses to different chapters within the classification. WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3.

The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar.

Changes made in ICD-10 are unique to that version of the classification and not retrospectively applied to previous revisions of the ICD. Therefore, any changes in ICD-10 such as the creation of new categories or relocation of conditions from one chapter to another are not retroactively added to ICD-9 or ICD-9-CM.

ICD-10-CM

In keeping with the placement in the ICD-10, chronic fatigue syndrome (and its synonymous terms) will remain at G93.3 in ICD-10-CM.*

While it appears most appropriate to classify chronic fatigue syndrome in ICD-10-CM in the same way that it is classified in ICD-10, this placement is not without problems. The primary concern with the current WHO placement in ICD-10 has been that the abnormalities of the brain in chronic fatigue syndrome patients most often cited in the literature are not found in all chronic fatigue syndrome patients. While chronic fatigue syndrome may be a heterogeneous group of disorders, some but not all are neurological in nature. Likewise, not all patients have experienced a viral infection prior to being diagnosed with chronic fatigue syndrome, nor are immune system anomalies universally found. Also of potential concern is the similarity between the type of neurological findings in chronic fatigue syndrome and in depression, which is a psychiatric disorder. Involvement of multiple systems has complicated the classification of chronic fatigue syndrome.

It should be noted that issues related to reimbursement have not been a factor in deliberations regarding placement of chronic fatigue syndrome in ICD. Modifications to ICD-9-CM (the classification currently in use) and in ICD-10-CM, its intended replacement, are based on relevant clinical information and adherence to the structure and conventions of the ICD. The decision of third party payers regarding their coverage and reimbursement policies are independent of the decisions regarding modification of the classification.

[PDF Ends]

*Ed: Since superceded. See: End of this page: http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/2/

 

[Dx Revision Watch]

I shall have some interesting information to post shortly in relation to proposals for ICD-11 classifications and codings for CFS, PVFS and (Benign) ME.


ETA: Are you aware that the right to edit your own posts beyond 4 days was removed on 2 June and that you cannot now delete your posts?

If you share my concerns for the implications for this change and for the cavalier manner in which it has been imposed without prior discussion please add your concerns to the thread below and vote against this sanction in the poll.

To vote and register your objection go to:

http://www.forums.aboutmecfs.org/showthread.php?5368-Forum-adjustment-editing-your-post