Sign the petition for rejection of change of name from ME to SEID

[Nielk]

https://www.change.org/p/institute-...&utm_term=des-lg-no_src-no_msg&fb_ref=Default

As sufferers of, carers for or supporters of people suffering from the debilitating neurological illness M.E. (Myaligc Encephalomyelitis) we call upon the IOM (Institute of Medicine) to cease any attempts to have M.E renamed as S.E.I.D. We also call upon the HHS (US Department for Health and Human Services) to reject the aforementioned name change. As people with first hand experience of the horrors of ME we do not feel that "Systemic Exertion Intolerance Disease" in any way expresses the severity, complexity nor the full impact that ME has on those who suffer from it. Indeed, we feel that changing the name will hinder, rather than help people in seeking proper diagnosis and/or medical support and could also undermine attempts to raise awareness of this serious and chronic condition among the general public. Sufferers of ME need awareness, support and treatment in the short term and research over the longer term to give them the best possible chance of achieving improvement, they do not need a "re branding" exercise that can do nothing to tackle the real struggles faced by people with ME.

 

[TigerLilea]

In the US ME is known as CFS, not ME. While I agree that SEID is not the best name for our illness, especially considering that we still don't know "what" are our illness is, SEID is a h*ll of a lot better than CFS.

 

[Nielk]

In the US ME is known as CFS, not ME. While I agree that SEID is not the best name for our illness, especially considering that we still don't know "what" are our illness is, SEID is a h*ll of a lot better than CFS.

In the US, ME will be in the ICD diagnostic code as of Octobr 2015.
This petition is for those who disagree with the name SEID.

 

[halcyon]

I need some help understanding the coding thing.

Are all the following true statements?

We presently use ICD-9-CM in the US, ME is not listed, CFS is listed at 780.71.
The ICD-10-CM, which we will use in the US soon (or already do?), lists ME at G93.3 and CFS at R53.82. A diagnosis of G93.3 excludes a diagnosis of R53.82.
The IOM proposes creating a new code (in ICD-10-CM?) for SEID.

Assuming the above are true, did the IOM recommend that anything should be done with G93.3 and/or R53.82 (deleted, moved under SEID code, etc.)?

 

[Nielk]

They didn't recommend that anything be moved. In addition, they did not specify where SEID should appear in ICD coding, except that it should be a separate code.

 

[halcyon]

So the petition is calling for a protest of a name change from ME to SEID, but that's not what the IOM is recommending?

 

[halcyon]

Also, regarding ICD-10-CM, does that mean that as of 10/1/2015, people in the US can be officially diagnosed with ME?

 

[WillowJ]

In the US, ME will be in the ICD diagnostic code as of Octobr 2015.
This petition is for those who disagree with the name SEID.

Kind of yes, kind of not.

PVFS will be in the ICD under G93.3, with ME being listed as an alias. Not sure whether ME would show up as "the name" or not--certainly not by default, but not sure whether the diagnostician could do something fancy in the computer to make it come up that way.

CFS will still be there in the normal place, called CFS not otherwise classified, for people who don't have viral onset. It's unclear what will be used to "prove" viral onset (chart notes from the time? lab tests from the time? a description of having had a virus at the time when one's history is taken?)

What about those who had bacterial or fungal onset? Some other kind of onset but still clearly have a neuro-immune disease with muscle fatiguability and PEM?

I am not at all certain that very many of us would be able to actually get into the G93.3 code, and pretty certain that DHHS would not be supporting it (they never have before, even though, when pressed, they say it's a different diagnostic criteria as compared to Fukuda... though they say patients fitting ME criteria should be treated the same as patients with Fukuda-CFS, when asked for treatment guidelines for ME, so it's a bit of a cute position).

That being said, it's not clear that SEID is the best name in the world, but I don't plan to sign the petition. SEID is a temporary name by all accounts, and to my way of thinking it is better than CFS, however little better. I can put up with it for a year or so.

 

[halcyon]

I didn't want to derail the thread with the coding thing, but I just wanted to make sure I understand what's actually being proposed before I decide to sign the petition or not. I'm guessing there are probably other threads here talking about ICD-10-CM so I'll go check those out.

 

[Nielk]

In the US ME is known as CFS, not ME. While I agree that SEID is not the best name for our illness, especially considering that we still don't know "what" are our illness is, SEID is a h*ll of a lot better than CFS.

This is your opinion. Many do not share that opinion. SEID has already been used extensively to ridicule us and i am sure that this will continue. Every person that I mentioned it to, started to laugh and did not believe that this name is describing a real medical disease.

 

[Ember]

So the petition is calling for a protest of a name change from ME to SEID, but that's not what the IOM is recommending?

The IOM Committee recommends that ME/CFS be renamed SEID: “The committee recommends that this disorder be renamed 'systemic exertion intolerance disease' (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.”

The Committee doesn't explicitly recommend renaming ME, but given that ME/CFS is typically shortened to ME or CFS, both these names are affected by their recommendation. Had the Committee not intended both ME and CFS to be affected, they could have clarified their intent of their recommendation in their report. Instead, they reject the name ME without adequately explaining why pain and neuro-inflammation are omitted from their core requirements:

“Conclusion: The committee elected not to include pain as a required element of its recommended diagnostic criteria for ME/CFS;”

“Conclusion: Sufficient evidence supports the finding of immune dysfunction in ME/CFS;”

The committee deemed the term “myalgic encephalomyelitis,” although commonly endorsed by patients and advocates, to be inappropriate because of the general lack of evidence of brain inflammation in ME/CFS patients, as well as the less prominent role of myalgia in these patients relative to more core symptoms.

In her P2P presentation, Dr. Klimas discusses the evidence of neuro-inflammation:

The PET scan paper (that was this year's paper) points out the fact that sometimes a single paper can be very relevant. I know we talk a lot about how many thousands of people cumulatively were in the evidence base to accept something. But you know, even n of 1 things are influential. Watanabe published a paper this year that looked at PET scans using a marker that really marks inflammation, neuro-inflammation, and published a very pretty series, a case controlled series of abnormal PET scans that were positive for neuro-inflammatory markers. So do we have to argue about neuro-inflammation, or can we accept that general systemic inflammation is attached to the brain and that the brain is also inflamed, and that these are the types of studies that are very compelling?

The study to which Dr. Klimas refers used the 2011 ME-ICC to select its subjects. But the
Committee argues that historically "diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS.... This term also fails to convey the full spectrum of this disorder.”

 

[Ember]

I am not at all certain that very many of us would be able to actually get into the G93.3 code, and pretty certain that DHHS would not be supporting it....

Surely it behoves DHHS to provide some timely guidance.

 

[Valentijn]

This is bizarre. ME is not being renamed by the US government. It can't be. Because THERE IS NO "MYALGIC ENCEPHALOMYELITIS" IN THE USA. How many times do we have to say it? At most ME is listed as an afterthought, included as a name which some people might use as an alternative or synonym to CFS, but which is not at all recognized as an entity unto itself. There is currently no ME diagnosis, no disease called ME, and no criteria for ME in the US.

IOM proposes renaming CFS and giving it a new definition focused on PEM. If you really like CFS and the fatigue-based Fukuda diagnosis and want to keep it, and prefer it to SEID, then by all means advocate keeping CFS and squashing SEID. But it's ridiculous to think that this has anything to do with ME.

Opposing SEID with the belief that you're somehow protecting "ME" is about as effective as shadow boxing. With the added risk of accidentally punching yourself in the face when you keep taking a swing at your nonexistent opponent. The BPS psychobabblers and ME/SEID-denialists at the NIH must be highly relieved to see a group of patients willing to attack their own cause and undermine progress. It just gives them an another excuse to keep Fukuda CFS.

 

[Ember]

ME is not being renamed by the US government.... At most ME is listed as an afterthought, included as a name which some people might use as an alternative or synonym to CFS, but which is not at all recognized as an entity unto itself.

In November 2011, Dr. Unger wrote, "Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward."

There is currently no ME diagnosis, no disease called ME, and no criteria for ME in the US. IOM proposes renaming CFS and giving it a new definition.... It's ridiculous to think that this has anything to do with ME.

The IOM Committee writes, “Historically...the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME. This term also fails to convey the full spectrum of this disorder.”

 

[Nielk]

This is bizarre. ME is not being renamed by the US government. It can't be. Because THERE IS NO "MYALGIC ENCEPHALOMYELITIS" IN THE USA. How many times do we have to say it? At most ME is listed as an afterthought, included as a name which some people might use as an alternative or synonym to CFS, but which is not at all recognized as an entity unto itself. There is currently no ME diagnosis, no disease called ME, and no criteria for ME in the US.

IOM proposes renaming CFS and giving it a new definition focused on PEM. If you really like CFS and the fatigue-based Fukuda diagnosis and want to keep it, and prefer it to SEID, then by all means advocate keeping CFS and squashing SEID. But it's ridiculous to think that this has anything to do with ME.

Opposing SEID with the belief that you're somehow protecting "ME" is about as effective as shadow boxing. With the added risk of accidentally punching yourself in the face when you keep taking a swing at your nonexistent opponent. The BPS psychobabblers and ME/SEID-denialists at the NIH must be highly relieved to see a group of patients willing to attack their own cause and undermine progress. It just gives them an another excuse to keep Fukuda CFS.

This petition was started by someone in the U.K.

It is true that currently there is no official diagnostic criteria of M.E. in the U.S. But, a great many patients in the U.S. are calling for the adoption of Myalgic Encephalomyelitis and do not want the name SEID. It makes sense then for people in the U.S. to sign this petition as well - if they would like the name M.E. and do not want the name SEID.
In addition, starting October 2015, M.E. will have a diagnostic code in the ICD-10.

Trying to tell us that we are "ridiculous" and that we are "undermining progress' will not be effective. This is like saying the majority of U.S. patients can't think for themselves and are imbeciles.

We are fighting for the historical name M.E. Don't talk down to us like we don't know what we are doing.

 

[Ember]

It is true that currently there is no official diagnostic criteria of M.E. in the U.S.

The IOM Committee nevertheless expects clinicians to have the ICC at their fingertips in addition to the "Report Guide for Clinicians:"

The committee decided against developing a comprehensive list of potential comorbid conditions, but points to conditions that clinicians may wish to consider that have been identified by the ME-International Consensus Criteria (ME-ICC) and the CCC, including fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, irritable bladder syndrome, Raynaud’s phenomenon, prolapsed mitral valve, depression, migraine, allergies, multiple chemical sensitivities, Sicca syndrome, obstructive or central sleep apnea, and reactive depression or anxiety.

 

[melamine]

From MEadvocacy.Org:

The IOM Report
The IOM report was “rolled out” on February 10th and was followed by a deluge of media coverage organized by the IOM. The report was made available in advance to Health and Human Services (HHS) and members of the media. ME stakeholders, clinicians, researchers, patients and advocates were kept in the dark until the official reveal.

The advocates who advise MEadvocacy.org reviewed the IOM report, the diagnostic criteria and the new name, Systemic Exertion Intolerance Disease (SEID). We compared the results with our stated mission and came to the conclusion that the criteria and name did not meet up with our original goals.
The Criteria:

The lack of exclusions will result in the inclusion of active (untreated) psychiatric-induced fatigue or other fatigue conditions.

• The criteria are too simplistic to properly capture the scope of ME, which is a complex, multi-system disease.

• The stress on fatigue, as the first/main symptom of the disease, gives the wrong connotation that it is just a “fatiguing” illness.

• The symptoms overlap too much with the clinical definition of depression.

• The omission of crucial symptoms that fit the core of the ME definitions such as immune impairments, neurological abnormalities and myalgia will result in misdiagnosis.

• The lack of recommendation for laboratory testing, such as blood tests to check for viral loads and Natural Killer (NK) cell functions, which will impede possible treatment options.

 

[Wayne]

a great many patients in the U.S. are calling for the adoption of Myalgic Encephalomyelitis and do not want the name SEID.

Hi @Nielk,

Thanks for taking the initiative on this. I think SEID is a disaster, and would like to see this misguided effort quashed as thoroughly and as quickly as possible. ME would work for me, but I often think that with the obvious immune system abnormalities, that a name highlighting this might work better.

I think we would have all been better off if CFIDS, which was used extensively for years, had not given way to CFS. I think CFIDS, or maybe just IDS, would better highlight the devastating immune dysfunction, and help the public make a connection with this horrific disease to the severity of AIDS.

Regarding the petition, it seems I can't sign it unless I give them my home address, which I don't want to do. Any way to get around that? And do you know why they would not make that optional? Thanks. And thanks again for working on this issue--time may be of the essence here.

Best, Wayne

 

[Nielk]

Hi @Nielk,

Thanks for taking the initiative on this. I think SEID is a disaster, and would like to see this misguided effort quashed as thoroughly and as quickly as possible. ME would work for me, but I often think that with the obvious immune system abnormalities, that a name highlighting this might work better.

I think we would have all been better off if CFIDS, which was used extensively for years, had not given way to CFS. I think CFIDS, or maybe just IDS, would better highlight the devastating immune dysfunction, and help the public make a connection with this horrific disease to the severity of AIDS.

Regarding the petition, it seems I can't sign it unless I give them my home address, which I don't want to do. Any way to get around that? And do you know why they would not make that optional? Thanks. And thanks again for working on this issue--time may be of the essence here.

Best, Wayne

I did not start this petition. I am just sharing/promoting it here. I don't think that you can avoid giving your address on this site - Change.org
This is what I found on their privacy policy - http://www.change.org/about/privacy

 

[Seven7]

OK see if I understand
ME - Does not exist , will not exist in USA ICD code
CFS will be replaced with SEID.

So any studies on SEID cannot be used for ME or at some point they international comunity will say
For USA
SEID in USA = ME (internationally)
FOr International
SEID does not exist only ME. but they are different.

Now I am confused.