ME and cfs to be classified as seperate illnesses

[Jerry S]

Thanks for writing this, Mithriel. I appreciate your experience and clarity. I agree that those with only unexplained fatigue and only depressive disorders must be separated from those with neuroimmune disease.

 

[Gerwyn]

Mithriel,

This is essentially what I was trying to say, that someone upthread I think misunderstood. ME has been slandered. CFS in this country really does describe ME. I know that when I read the symptoms of the CCC or Byron Hyde's ME, that's what I have. Yes, it started with Mono. But yes, I was fairly functional at first, I just kept relapsing and relapsing and kept being told "Mono lingers" so I just figured I'd wake up one day and it would be gone, I had to live life in the meantime. I know that CFS is being widened by many to include the "just tired all the time," but that is not my case. Yes, I get exhaustion. Yes, in the beginning I got waves of it (at least then I could sleep). But I have so many more symptoms- cognitive, chronic nausea, violent headaches, 200 bright spots or punctate lesions in my brain. But in the US, to say you have ME, even to say full out Myalgic Encephalomyelitis, gets even doctors scratching their heads. They haven't a clue. CFS is a horrible name, I would have loved to use ME but it's pointless in the US, I prefer Neuroimmune something.

It's making me a bit ticked off that people seem to want to slide us with CFS in the US- the only diagnosis we are likely to get- into a separate disease. Yes, I've met people with CFS who I do not think have it. They have depression, they have something else. Their brains are intact whereas mine is like swiss cheese. But I've met many with CFS who definitely meet the CCC. Fine, re-diagnose us, but please use the correct testing measures, please have a name that doesn't imply that the sickest of the sick are lazy. And as for OI, in this country I've seen that described as a person with the worst outcome. I know it's been hell in my life, but treatment for it did not cure me. Nothing has cured me or come close. I have my better periods if I can sleep, but I'm still in a fog, my brain is still barely functional until after 1pm, and even then...

I guess what I mean is that CFS doesn't exist. Chronic Fatigue is part of many different diseases. Find out what they are. But ME does exist. However, in this country, you have to see like one of 3 doctors to get that diagnosis. My doctor is sure I'm quite ill and have XMRV, but he still calls it CFS. So separating them out in that way, without going through a further diagnostic workup, is just going to screw over those who have been diagnosed with CFS.

I'm not taking a swipe at you, btw. Someone else upthread I think misunderstood me, then there were several posts that said what I was trying to say (like Dr. Yes). I think you've got it right.

FUKUDA does not diagnose ME or anything close to it.The CCD does.The name change to myalgic encephalopathy should help when Us experts put it into practice

 

[alphahusky]

FUKUDA does not diagnose ME or anything close to it.The CCD does.The name change to myalgic encephalopathy should help when Us experts put it into practice

I agree. But with that they've done to the term ME in the UK makes me shy of it.

 

[helsbells]

Irrespective of the case definition no one as far as I know would get a diagnosis of ME in the UK today. I was diagnosed as CFS between 1996 and 2000. I am Canadian Criteria. I have no idea whether or not my doctor used any criteria whatsoever. They merely 'ruled out' MS, cancer etc etc. It's a long time since I had MRI's and lumbar punctures (normal - ha ha bloody ha) and I don't know how much these methods have been refined since 2000, however, there are still no bio markers for 'our' condition. It remains a non - condition as far as the NHS is concerned. We need to get repeating this. And also that the only treatment offered is CBT/GET and in my case, I was once given homeopathy via NHS and told you'll notice you will start getting colds and flu again and that's a sign you are getting well'

LMAO

Where you part of that homeopathy trial in about 1999 - she had a double barrelled name I think initials E W J??

 

[Bob]

CFS (US) was a bodged term invented by the CDC when they were asked to investigate an epidemic that was most likely another ME epidemic. It was not a very good description of the original patient's disease.

Mithriel, I think what you are saying is that, for practical purposes at the present time, ME and CFS are the same? (Or, at least, the same illness gets given both names.)

This is the point that I've been making...

So when any of us talk about ME and CFS as separate diseases, then we need to explain what we mean, and what diagnostic criteria we are referring to...

Otherwise no one knows what we are talking about... there's been quite a bit of confusion on this thread.

 

[Bob]

It's making me a bit ticked off that people seem to want to slide us with CFS in the US- the only diagnosis we are likely to get- into a separate disease.

However, in this country, you have to see like one of 3 doctors to get that diagnosis.

I agree with your concerns alpha.
These are the concerns that I've been expressing, in my earlier posts, about separating ME from CFS.

I agree with what you are saying... that doctors will never be willing to give an ME diagnosis when they can give an easier CFS diagnosis.
This is why I think that there should be a single name for ME/CFS, which can then be divided into subsets for research and treatment purposes.

I think that a lot of the issues depend on which diagnostic criteria they propose to use for both ME and CFS (for the ICD-10-CM).
I assume that the authorities would need to agree a separate diagnostic criteria for both conditions, so therefore all patients would need to be reassessed using the new criteria.

 

[Dx Revision Watch]

Bob said:

We can't even get the Canadian criteria adopted in England...

...we can't even get our UK patient orgs to promote the adoption of the CG.

In 2006, the ME Association ran a formal postal ballot of its membership on whether the Association should adopt the CG.

The MEA's magazine ran a double page spread of opinion for and against. Dr Charles Shepherd lobbied against the motion but no external medical professional was invited to put forward the case in favour.

Despite the influence of Dr Shepherd amongst the a-political membership, the vote went in favour of adoption.

What did the MEA do? They issued a notice informing the membership of the outcome of the vote and stated that the Association had adopted the CG "in principle". (What they meant by "in principle" was not defined.)

Then they deftly kicked the Canadian Criteria under the carpet. Dr Shepherd continues to argue against the use of the CG.

Is any research being carried out anywhere using CG, other than that undertaken by WPI and apparently, the ME Research UK co-funded Swedish XMRV study?

Suzy

 

[Dolphin]

Is any research being carried out anywhere using CG, other than that undertaken by WPI and apparently, the ME Research UK co-funded Swedish XMRV study?

Suzy

http://www.meresearch.org.uk/research/projects/bioenergetics.html
Investigators
Prof. David Jones and colleagues

Institutions
Institute of Cellular Medicine, University of Newcastle, Newcastle upon Tyne, UK

Given these findings, the aim of this project is to study, in the in vitro setting, the function of an energy-generating enzyme which the researchers hypothesise might be under-functioning in ME/CFS. A range of in vitro studies will be undertaken, all based on primary assay and culture of muscle cells (myocytes) derived from ME/CFS patients (fulfilling the Canadian criteria for ME/CFS) and matched normal and chronic disease controls (following establishment of the techniques using existing myocyte cell lines).

 

[Bob]

...we can't even get our UK patient orgs to promote the adoption of the CG.

Yes, it's a very sorry state for our country to be in!
(Except, we have to start talking about England and Scotland separately now, because Scotland is adopting the Canadian guidelines.)

Is any research being carried out anywhere using CG, other than that undertaken by WPI and apparently, the ME Research UK co-funded Swedish XMRV study?

Hmmm... I don't know, but I could hazard a guess that there's not much going on!

 

[Dx Revision Watch]

In a previous posting in this thread, I provided links for and information on the current proposals for the forthcoming US version of ICD - the ICD-10-CM, scheduled for implementation in October 2013.

One of the links was for this historical CDC document from 2001, which I hadn't seen until recently, when it turned up by chance during one of my daily search engine fixes.

I've posted the content in full, below, with apologies if the content of this 2001 document has already been posted.

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 ICD-10-CM have since been superceded as per my previous post #97)


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 as per my previous post #97

 

[Dx Revision Watch]

Thank you, Tom.

Suzy

 

[Dx Revision Watch]

Yes, it's a very sorry state for our country to be in!
(Except, we have to start talking about England and Scotland separately now, because Scotland is adopting the Canadian guidelines.)

Yes, this proposal has been welcomed, it will be interesting to see how it pans out in practice.

 

[Bob]

Yes, this proposal has been welcomed, it will be interesting to see how it pans out in practice.

Yes, it will be very interesting, won't it Suzy... it might even have unforeseen positive consequences for the ME community in England.

 

[Bob]

In a previous posting in this thread, I provided links for and information on the current proposals for the forthcoming US version of ICD - the ICD-10-CM, scheduled for implementation in October 2013.

One of the links was for this historical CDC document from 2001, which I hadn't seen until recently, when it turned up by chance during one of my daily search engine fixes.

I've posted the content in full, below, with apologies if the content of this 2001 document has already been posted.

Thanks for all the details Suzy... and thanks for the info regarding ICD-10 and ICD-10-CM in your previous posts... it's much appreciated.

 

[Bob]

The majority of UK patients receive their diagnosis from medical professionals within the NHS. If CFS were to be placed in a different chapter of ICD, other than Chapter 6 to which it is currently indexed, my concern is that given the current lack of tests available within the NHS, that NHS GPs, NHS paediatric consultants and NHS consultants may "play safe" and plump for the "CFS" diagnosis and existing patients might find themselves being "downgraded" to "CFS" and that G93.3 (Benign) myalgic encephalomyelitis might become a "widow" diagnosis, that many NHS GPs and consultants will avoid.

So until the science is sorted, however much I dislike the term "CFS", I consider it could hurt UK patients if the current close association with G93.3 ME were no longer there.

I agree with your concerns Suzy.

 

[Mithriel]

Bob said

Mithriel, I think what you are saying is that, for practical purposes at the present time, ME and CFS are the same? (Or, at least, the same illness gets given both names.)

ME is probably the same as one of the illnesses covered by CFS. Any other consideration to the contrary, CFS is a useless name now because it means so many different things and has included so many different patient groups.

I think the simplest solution is to consider "ME/CFS" as the illness we share.The psyches carry on with CFS but mean somatisation so we should never refer to ourselves as having it even if doctors insist.

ME/CFS is probably what is picked up by the canadian guidelines.

One of the problems with patient groups in the UK is that many of the members have idiopathic fatigue rather than ME/CFS. Severe ME patients can't become active so the voices and opinions are skewed.

Mithriel

 

[Frickly]

Thanks Bob! :Retro smile:

From reading through this thread, it seems that most people in the USA get a CFS diagnosis because ME doesn't exist there; not in the minds of the doctors anyway... so we really confuse and upset people when we dismiss CFS as a lesser illness... or as a psychiatric illness.

People on this thread have been offended when it has been said that people with 'CFS' are 'just tired'... Many people don't understand what is meant by that because everyone in the USA is given a CFS diagnosis, no matter what their symptoms are...

I think most of us probably have a diagnosis of 'CFS' unless we are lucky enough to be Canadian... or in the UK we have a CFS/ME diagnosis.

I understand that not everyone diagnosed with ME/CFS has the same illness, and in my opinion, we should use a more specific diagnostic criteria for research purposes. And I understand that not everyone diagnosed with a fatiguing illness has a neuro-immune condition.
But those of us with a CFS diagnosis may have ME as defined by the Canadian criteria.

Bob

 

[Angela Kennedy]

I agree with your concerns Suzy.

Me too. 'until the science is sorted' is a crucial issue.

 

[Bob]

ME is probably the same as one of the illnesses covered by CFS.

Yes, I agree.

I think the simplest solution is to consider "ME/CFS" as the illness we share. The psyches carry on with CFS but mean somatisation so we should never refer to ourselves as having it even if doctors insist.

I agree, except many of us do refer to ourselves as having CFS, because that is what so many of us are diagnosed with.

ME/CFS is probably what is picked up by the canadian guidelines.

I would bet that almost all of us on the forum would be diagnosed with ME using the Canadian guidelines, or similar criteria.

 

[Dx Revision Watch]

ICD-11 Alpha Draft scheduled to launch in May

New thread:

http://www.forums.aboutmecfs.org/sh...scheduled-to-launch-in-May&p=77933&viewfull=1

ICD-11 Alpha Draft scheduled to launch in May