ME and cfs to be classified as seperate illnesses

[Jerry S]

And, the CDC diagnostic criteria for CFS does include cognitive dysfunction, including impaired memory or concentration as a primary symptom for CFS. It also includes PEM. Under other common symptoms it includes visual disturbances (blurring, sensitivity to light, eye pain or dry eyes.)

Fukuda 1994 does include cognitive disfunction, but it is one of eight symptoms - four of which must be present in addition to chronic fatigue. PEM is included in the eight symptoms, but it is not required, if four of the other seven symptoms are present.

I think, though, we can all agree that neuroendoimmune dysfunction is one we can all support. It was Dr. Nancy Klimas who suggested it to the name change committee. Missed opportunity.

The WPI uses the term neuroimmune disease. Dysfunction can be interpreted to mean a functional disorder, i.e. one without a known organic cause.

 

[usedtobeperkytina]

Yes, I prefer "disease."

And, Dr. Yes, I guess I will also try to get the ME diagnosis too if it is accepted in US. Interesting information you posted. I am educated now.

I listened to half of Dr. Jason's talk. I see his point that it doesn't say which is required, just any four of the eight, and for the survey, they threw in emotional and again, since it was the combination required, it included many who have other diseases. I still am concerned because for three years, my symptoms grew gradually. And then I plummeted. I just don't want to exclude those like I was. I don't have the answers.

If only our pee was blue, something that other illnesses don't have. But so many of our symptoms are associate with other illnesses and also can sound like what healthy people have in certain conditions. Except, ours is so severe we are severely limited.

So I guess to get the ME diagnosis I must go to neurologist?

I don't know. I am thinking of just waiting until XMRV test comes out and then I will head to infectious disease doctor.

When is this change going to happen, Dr. Yes?

Tina

Dr. Yes, did I miss the criteria proposed for the new US ME? cognitive problems, maybe I missed it. If it isn't in bullet point, I likely saw it and it didn't sink in. I am so sorry folks. Thank you for being patient with me.

 

[Dr. Yes]

Hi again Tina,

I don't know. I am thinking of just waiting until XMRV test comes out and then I will head to infectious disease doctor.

I think a lot of folks are going to end up doing that!

When is this change going to happen, Dr. Yes?

Not for another three years... October 1, 2013, to be exact. In the meantime, I wonder if it is possible to push for the inclusion of CFS in G93.3, as in the Canadian version..

Dr. Yes, did I miss the criteria proposed for the new US ME?

There aren't any that I know of. What case definitions the WHO uses is something of a mystery, at least for things like ME and post-viral fatigue syndrome. Hopefully we won't have to go with a CDC definition; they don't really have one right now either, except as an attempt to say that "whatever it is, it ain't CFS!" The CDC seems committed to a view that ME and CFS are distinct diseases, and totally ignores the history and existing clinical case definitions of ME. So I have no idea how doctors in the US will diagnose it; my guess is that a friendly doc could use the Canadian Criteria to validate diagnosing us with ME.

I am so sorry folks. Thank you for being patient with me.

Sorry? Patient?? I like your posts!! They're always interesting and thought-provoking! :Retro smile: And (better still) sometimes funny:

If only our pee was blue, something that other illnesses don't have.

That should be the Phoenix Rising motto. Or a song:

"If only our pee was blue..."


​

 

[starryeyes]

If we drink enough blue Kool-Aid our pee will be blue!

 

[pollycbr125]

In the Sofia Mirza case Chauhdhri (sp) wanted to call it ME it was the other doctor who wouldn't. Many doctors here would prefer it to be known as ME.

I read somewhere that SW etc thought they would get money from the CDC if they were researching CFS.

The name is used as a weapon against us.

Mithriel

i wonder if Dr Chauhdhri still has some of Sophia's tissue samples . It would be interesting to have these tested for xmrv and see if Sophia was positive .Sorry ive gone off on a tangent havent I

 

[Jerry S]

Hi again Tina,

Sorry? Patient?? I like your posts!! They're always interesting and thought-provoking! :Retro smile: And (better still) sometimes funny:

Same here. Well said, good doctor.

 

[alphahusky]

There is no ME in the US

What gets me is that "Chronic Fatigue Syndrome" now apparently includes anyone who gets "fatigued," including people who are depressed and nothing else. However, even with the three doctors I've seen in this country who treat my disease, not one of them has ever referred to it as "ME." No one here uses that moniker. I get annoyed when people insist ME is not CFS, even though I understand they are trying to say that CFS is including people without this disease, whereas ME was already a known quantity and specific only to ME. I would prefer ME as the name, but since I've been diagnosed with CFS, then what happens to me? I have 200 punctate lesions (bright spots) in my brain- still, neurologists consulted called that "normal." I had high pressure during the spinal during my C-Section- not a word was said, though I developed a horrible headache that lasted two weeks after. I have at one time had 67 symptoms of ME (or Gulf War Illness) at the same time. That was for years. Some of those have dropped off, some symptoms are worse, but there are fewer. Would my timing in the illness now consign me to permanent CFS diagnosis, and therefore still never getting disability, never uttering the name of my disease in public, being shunned when I do?

For what it's worth, I also do not think Fibromyalgia is the same disease. It definitely started for me a couple of years after ME/CFS, and worsened considerably- and I mean to the point I was on 100 mu of Duragesic for 3 1/5 years and am now on Percocet and probably will go to something stronger again after the baby is born. But if I say I have Fibro, people have a smidge of understanding, they do not treat me like a total nutcase, they understand a bit if I have to cancel things constantly.

If they separate out CFS and call it a neuro disease, it will still have that name that can't be uttered without eyeball rolling. They need to separate out those who do not have the disease, just that symptom, and they need to then put all those with the disease- and the bio markers, of which I have all- under one cohesive and meaningful name. ME sounds right, but yes, I hate the "me disease" BS which attached in the 90's (or so I heard it). Something with Neuroimmune sounds exactly right. But please, don't make me stay with this name for the rest of my life. They want to do this in order to keep us all feeling embarrassed and ashamed.

I'm going to go bash my head into a wall now.

 

[Bob]

...even in the UK I understand they have shifted now to CFS for the most part...

Just for clarity, I believe that England officially uses the term CFS/ME.
In my experience, patients generally prefer to refer to themselves as having ME and doctors seem to prefer calling it CFS.

 

[Bob]

My doctor never used any diagnostic criteria because I diagnosed myself and told my useless doctor that I had ME... we never even had a discussion about it... he just grunted and wrote something on his computer. (Sometimes we encounter unhelpful doctors in the UK, but we are free to shop around for a better doctor).

 

[Bob]

I believe that separating ME from chronic fatigue would be the single most important step forwards for our community for gaining insight into the disease and for finding a treatment.

I think it's important not to get bogged down with labels such as ME, CFS and chronic fatigue (CF), but rather look towards the outcomes for gaining insight into the diseases.

Diagnostic criteria are crucial for effective research, and I believe it is important to have a tighter definition of ME (or ME/CFS), and the Canadian criteria would be a helpful step towards this.

I believe that a tighter definition of ME would lead to far more effective research and a better understanding of the illness which would, in turn, lead to finding more effective treatments faster.

If the definition of ME was tightened up, then it would automatically leave some people without a diagnosis of ME (or ME/CFS). These people would then need an alternative diagnosis, which could be CFS or CF. I expect that CFS might be a preferred name than just 'chronic fatigue' for these people who fall outside of an ME diagnosis using tighter criteria.

I believe that there is one important aspect of ME which separates it from chronic fatigue, and that is 'post exertional malaise'. 'Post exertional malaise' is an essential part of ME, and is a way to separate ME from other fatigue illnesses.

Anyone who has ever experienced a severe crash (a relapse) after over-exertion will know what is meant by 'post exertional malaise'.

The Canadian criteria does include 'post exertional malaise' as an essential criteria.

Personally, I believe that we will never move forwards with a better understanding of ME until it has a more specific diagnostic criteria, such as the Canadian consensus criteria. (Note that the WPI are effectively using only the Canadian criteria in their research into XMRV.)

It is impossible for researchers to understand an illness that is not clearly defined.
As long as researchers are looking at multiple illnesses, then little progress will be made defining, understanding and treating ME.

So, like I said at the beginning, I believe that separating ME from chronic fatigue would be the single most important step forwards for our community for gaining insight into the disease and for finding a treatment.

 

[Frickly]

"What's in a name? That which we call a rose
By any other name would smell as sweet."

This subject really frustrates me. We all have the same illness. Of course there are people mixed in that are just tired or have another illness that was misdiagnosed. Bottom line is we cannot let the powers that be divide us. We all have to work together and help each other. Please...lets support each other.

 

[Bob]

This subject really frustrates me. We all have the same illness. Of course there are people mixed in that are just tired or have another illness that was misdiagnosed. Bottom line is we cannot let the powers that be divide us. We all have to work together and help each other. Please...lets support each other.

Frickly, I totally understand your anxieties with this issue, but I don't agree with some of what you say...
I agree that we should all support each other, but unless an illness is clearly defined, then it can't be researched, understood or treated.
I think that diagnostic criteria are especially crucial in terms of research and finding an effective treatment.
I believe that people diagnosed with ME/CFS might not necessarily all have the same illness, but there might be similar illnesses falling under the same name. This is a problem for all of us.
If ME had a more specific diagnostic criteria, such as the Canadian criteria, then I believe that would strengthen the ME community, not weaken us, and, crucially, it would enable researchers to do far more effective research. It would also stop the psychiatrists from so easily hijacking the disease for their own purposes.

Addition:
Thinking about this further, I don't quite understand the proposals, and I've been assuming that they are proposing separating ME and CFS in order to make the diagnosis of ME tighter by using more specific criteria (and I shouldn't assume this, should I) - And I've been assuming that the proposals are for reasons which would benefit our community (but I shouldn't assume this either!) - If they are proposing separating the illness just to make the world of ME/CFS more muddled and confused, rather than purely in order to use stricter criteria for ME, then I agree with what you say Frickly.

Can anyone give any clarity on this at all?

 

[Frickly]

Thanks Bob

I agree that we need to tighten the definition but I feel that some with the diagnosis of ME are throwing those of us with "CFS" to the wolves. I think we can advocate for a better definition but still support those that were unfortunate to get stuck with the name "CFS". We do not accept this title but have to live with it for now. We all have the same disease. We cannot let our governments and medical community divide us. I would also like further clarification.

Frickly, I totally understand your anxieties with this issue, but I don't agree with some of what you say...
I agree that we should all support each other, but unless an illness is clearly defined, then it can't be researched, understood or treated.
I think that diagnostic criteria are especially crucial in terms of research and finding an effective treatment.
I believe that people diagnosed with ME/CFS might not necessarily all have the same illness, but there might be similar illnesses falling under the same name. This is a problem for all of us.
If ME had a more specific diagnostic criteria, such as the Canadian criteria, then I believe that would strengthen the ME community, not weaken us, and, crucially, it would enable researchers to do far more effective research. It would also stop the psychiatrists from so easily hijacking the disease for their own purposes.

Addition:
Thinking about this further, I don't quite understand the proposals, and I've been assuming that they are proposing separating ME and CFS in order to make the diagnosis of ME tighter by using more specific criteria (and I shouldn't assume this, should I) - And I've been assuming that the proposals are for reasons which would benefit our community (but I shouldn't assume this either!) - If they are proposing separating the illness just to make the world of ME/CFS more muddled and confused, rather than purely in order to use stricter criteria for ME, then I agree with what you say Frickly.

Can anyone give any clarity on this at all?

 

[Frickly]

Carrigon,

I have a diagnosis of CFS and I assure you I am not "just chronically rundown". I have chronic EBV and Mycoplasmal infection. My twin siste has lyme disease and a mycoplasmal infection. The name means nothing. The symptoms mean everything. I also have cognitive issues and everything that comes with this disease. Please don't throw us under the bus.

 

[Mithriel]

The diagnosis means nothing. Most of us in the UK have a diagnosis of somatisation disorder even if the doctor calls it CFS or ME because that is what the patient likes.

No one is saying that

Alphahusky said

I would prefer ME as the name, but since I've been diagnosed with CFS, then what happens to me? I have 200 punctate lesions (bright spots) in my brain- still, neurologists consulted called that "normal." I had high pressure during the spinal during my C-Section- not a word was said, though I developed a horrible headache that lasted two weeks after. I have at one time had 67 symptoms of ME (or Gulf War Illness) at the same time. That was for years. Some of those have dropped off, some symptoms are worse, but there are fewer. Would my timing in the illness now consign me to permanent CFS diagnosis, and therefore still never getting disability, never uttering the name of my disease in public, being shunned when I do?

What we want is for people like you to be correctly diagnosed. It is in your interest to campaign for that as well. If you had been overtly diagnosed as having hysteria, as many in the UK have, you wouldn't want to cling to that so this is no different.

Frickly said

I agree that we need to tighten the definition but I feel that some with the diagnosis of ME are throwing those of us with "CFS" to the wolves. I think we can advocate for a better definition but still support those that were unfortunate to get stuck with the name "CFS". We do not accept this title but have to live with it for now. We all have the same disease. We cannot let our governments and medical community divide us. I would also like further clarification.

No one wants to throw anyone to the wolves. It is about helping people stuck with the diagnosis of CFS when that name trivialises their symptoms and leads to them being wrongly treated and denied benefits.

Many people with a diagnosis of CFS actually have ME, but many don't, especially in the UK. We will never find a common factor in the illness if lots of different illnesses are included.

Think of this. If infections had all been called "fever" then they would never have been able to isolate the bacteria that cause different infections and would never have been able to find antibiotics against them. The idea of bacteria causing "fever" would have been dismissed as no single organism would have been found and they would all have been written off as artefacts or passengers. A homogenous patient population is ESSENTIAL to tease out the mechanisms of an illness.

Also, many people who simply have fatigue are being told they have CFS. Think of Reeves' definition where you could be diagnosed if you felt fatigue was interfering with your life for the past four weeks. As Len Acheson showed this will pick up lots of people with depression or stress. In the UK a training video for doctors advises that patients should be told not to drink every night!

I'm not saying that simple fatigue shouldn't be treated but it is not ME or even what most people here have as CFS. If this situation is allowed to continue there will be much more of them than of us and this sort of fatigue is often time limited or treatable with psychology. Why give benefits for an illness that will soon resolve?

In the UK if you don't get better with CBT they assume you don't want to get better. This situation will spread to the US unless we all unite to separate out those with chronic fatigue from those with ME and other neuroimmune diseases.

Mithriel

 

[alphahusky]

What we want is for people like you to be correctly diagnosed. It is in your interest to campaign for that as well. If you had been overtly diagnosed as having hysteria, as many in the UK have, you wouldn't want to cling to that so this is no different.


Mithriel

I wasn't necessarily disagreeing, but I know that my doctor knows that I don't just have "chronic fatigue." But yet, he still has a Chronic Fatigue Syndrome clinic. I also would like the diagnosis tightened up. When I read the article, it didn't seem to me like that was necessarily going to happen. I used to post everywhere as "chngthnmtoME,' because I believe very strongly that many of us diagnosed with CFS actually have ME. However, I also note that the diagnosis of CFS continues to be watered down to include, well, anyone it seems, if they get fatigued. So I do support changing the name and dropping those who have simply "chronic fatigue" from the diagnosis. I think those who have "chronic fatigue" likely have something else going on- depression, too much stress, another disease like hypothyroid or MS. They should then get that diagnosis. CFS is a BS diagnosis meant to take everyone with ME and turn them into "chronic complainers." We are not the same as those with CF. But there are going to be people now with ME who get dropped into CFS unless we have an ironclad diagnostic tool that is accepted. Just like we have now in the states, where ME is just not used.

 

[alphahusky]

In the UK if you don't get better with CBT they assume you don't want to get better. This situation will spread to the US unless we all unite to separate out those with chronic fatigue from those with ME and other neuroimmune diseases.

Mithriel

Also, I missed this part, but we over here are also sent to psychiatrists. We don't get disability unless we fight harder than we can. Many, many of us have gone homeless. I don't mean to be bitchy, but please don't think we over here are having it so great. There are stories here, too, of people being put into mental wards because of this disease. Kids are being taken from parents. When I went for a sleep study, which they essentially denied, I got lectured about how I can't stay on sleeping pills forever and offered CBT, and when I didn't want to do it, they washed their hands of me. I've been physically handled and thrown out of doctors' offices and an ER while I was having a visible seizure. My first husband left me right after that, after that doctor told him he needed to spank me more often (I guess I'm just a misbehaving, spoiled child- not that I support spanking under any circumstances). I almost went homeless so many times I live in constant fear of it. And because of my pain meds, I've been ignored in other ER's and my husband once threatened that if we divorced, he'd take full custody of my daughter because of my drugs. So please, don't think we have it easy here. Not that I'm saying that's what you are saying. But we are overwhelmingly treated as psych cases here, too. We just honestly don't have enough room in the psych hospitals to commit us all. Which I've also had suggested to me. I think there are more doctors here who treat the disease, if you can find them (there's one in my whole state, and insurance here doesn't cover going to another state). This is also not to mention the millions here who still have no health insurance, especially if they hold no jobs and can't get Disability. Many with this disease just don't have access to doctors. I've been told by more than one doctor that if I didn't see a psychiatrist, he wouldn't treat me. One of those is one who threw me out of his office.

We have overwhelming sympathy for your situation, but please don't think it's not similiar here. For all of the years I've lived in this state (8), it wasn't until my specialist from Illinois just happened to move here that I got treatment for ME/CFS. Over here, most of us, if we identify at all with any disease, we just say we have Fibro. Otherwise, the eyes glaze over or the doctors immediately get snarky and prescribe antidepressants.

 

[Bob]

I have a diagnosis of CFS and I assure you I am not "just chronically rundown". I have chronic EBV and Mycoplasmal infection. My twin siste has lyme disease and a mycoplasmal infection. The name means nothing. The symptoms mean everything. I also have cognitive issues and everything that comes with this disease. Please don't throw us under the bus.

Hi Frickly,

In England, the terms ME and CFS are interchangable and mean exactly the same thing. The official name is CFS/ME. I'm not sure how it works in the USA, but I would imagine that your doctor uses the term CFS but that you do actually have ME. From what you've said about your illness, it looks to me like you do have ME and not just long-term fatigue. If ME and CFS were separated, using new diagnostic criteria, then we'd all have to be re-assessed using the new criteria anyway... You can work out what diagnosis you'd be given yourself, by looking at the diagnostic criteria they use. If they were to move ME diagnosis to the stricter Canadian criteria, then you can look at the Canadian criteria youself and see if you'd fit into that catagory.

Frickly, I don't think that you need to be afraid of the terminology or name they've given your illness at present... the proposed changes would be more to do with what illness you've presently got, not what they presently call it.

From what you've said about your illness, I think that the term 'CFS' that you've been given is quite meaningless... and I wasn't aware that they separated ME and CFS in the USA anyway (do they?).

The doctors don't understand CFS/ME anyway... I diagnosed myself with ME, and my doctors just agreed with me... they didn't examine me!...

If there was a new diagnostic criteria for ME and CFS, then you'd have to be re-diagnosed using the new criteria, and that would decide if you had ME or not.
If you look at the Canadian criteria, then you can work out for yourself if you have ME according to those criteria... or if you look at the presently used criteria for ME, you can work out for yourself if you have ME...
It sounds like you do have ME rather than just fatigue, as you have so many other symptoms.

Bob

 

[Bob]

No one wants to throw anyone to the wolves. It is about helping people stuck with the diagnosis of CFS when that name trivialises their symptoms and leads to them being wrongly treated and denied benefits.

Many people with a diagnosis of CFS actually have ME, but many don't, especially in the UK. We will never find a common factor in the illness if lots of different illnesses are included.

I totally agree with what you say here Mithriel.

I think that this discussion has led some poeple who have been given the label of 'CFS' to be fearful that they will be neglected if ME is separated from CFS.

I totally understand this anxiety, but I think it is a misplaced anxiety, because the present terms of ME and CFS are irrelevant if the diagnostic criteria are to be changed... we would all have to be reassessed using the new criteria.

I believe that the new CFS category would be just what it says... a chronic fatigue illness without the neurological symptoms and other complex symptoms of ME... the main symptom would be fatigue, and it wouldn't involve 'post exertional malaise'.

I think that the aim of separating ME from CFS should be to separate a severe multi-system neurological disease (ME) from a disease which has fatigue as its main or only symptom (CFS).

ME has many distinct neurological symptoms and other symptoms, one of which seems to be 'post exertional malaise', but also profound cognitive difficulties such as memory loss.

I don't understand the motivation behind the ICD-10 proposals, but I believe that ME needs to be made a distinct disease, using more specific diagnostic criteria (such as the Canadian criteria) if progress is ever to be made in terms of understand and treatment of ME.

 

[Frickly]

Hi Bob,

Thanks for your thoughtful reply. Just to clarify, the term ME does not exist in the United States and never has. We are all diagnosed with CFS and this does not mean we are just fatigued. Also, from reading through this thread it seems that many feel that those diagnosed with CFS are largly tired, depressed or have another illness such as thyroid problems. This is simply not true. We have what is called ME in other parts of the world.

It is very difficult to get a diagnosis of CFS. It took me six years to get this diagnosis. Doctors are much more comfortable with the depression label and do not like to use the words Chronic Fatigue Syndrome. Believe me, they are not just throwing the CFS label at anyone who is difficult to diagnose.

My symptoms were identical to multiple sclerosis and rheumatoid arthritis. I literally thought I was dying and still...they just wanted to prescribe antidepressants. No one ever bothered to do an MRI to see if I actually did have MS. :Retro mad: They also refused to do a scan of my neck to find out why my lymph area had been swollen for 10 years! Eventually I did find a doctor that tested for the mycoplasma, EBV, MS, glutathione, ect. Then I was labeled with Chronic Fatigue Syndrome.

We do not embrace this label. It does not describe our illness and I sure don't go around telling people I have CFS.

I think the problem with separating ME from CFS is that it is, in reality, separating our community. This is counterproductive as we are stronger as a group. Rather than dividing our community we should be working on a new diagnostic criteria and doing away with the CFS label all together. This I would fully support.

I may be interpreting this wrong but this is my gut reaction from the title of this thread. If I feel this way then I am sure there are many others who feel uncomfortable as well. This is a difficult and confusing subject that I try to stay away from. Woops....too late...:Retro smile: