SEID vs CFS vs ME

[maple]

Call it Hell.

 

[EtherSpin]

CFS cannot be topped as worst term ever, it helps me in one small sense, if i see a doctor or someone working in the field of diet/nutrition and they claim a supplement or dietary alteration helps "Chronic Fatigue" in their damn laundry list of claims I know to discount them because a competent doctor who vaguely knows about ME/CFS would know not to hijack that terminology and refer to someones temporary lethargy as being akin to our s***ty condition that generally affects our cognition as much as our locomotion and constitution.

SEID seems a vague improvement by virtue of not containing within it a pained trope/term as I mentioned above, I don't mind disorder vs syndrome as the people who have caused trouble for me don't focus on distinctions like that, they just confuse CFS with things like anemia, depression driven fatigue, low vitamin D and the like..
my smaller issue with "SEID" is actually the word "intolerance" as the troublemakers I mentioned are also the type to scoff at "Intolerance" - I could imagine them ROFL-ing and saying "so you think you are allergic to exercise?"

basically SEID seems *really* damn close to being a well serviceable term that describes a large enough part of our problem and commands a bit of authority as should be the case with something that can rob us of any type of social life or autonomy

 

[Rufous McKinney]

I, for one, without hesitation would classify my condition as having progressed. I

Yes: progressed. And this really concerns me because I feel that in addition to the ridiculous situation of Diagnostics and Names and Causes....more concern about the Progression seems warrented from the Medical Industry. And if people force themselves to work and it leads to permanent bedridden: then they should not be forcing their bodies.

I forced my body. I am so sorry. Body.

 

[Rufous McKinney]

because my baseline symptoms exist even without exertion. PEM just amplifies some of the symptoms

This is true. Here.

 

[Rufous McKinney]

SEID seems a vague improvement by virtue of not containing within it a pained trope/term as I mentioned above,

so its now four.5 months into 2019. I just self referred self to make an appointment with an Immunologist.
Thinking: can I discuss anti-virals. And need to understand this naming business because I intend to bother my insurance company a whole lot, if at all possible. soon.

What do I have: they ask?. ME I said. The nice receptionist couldn't pronounce it. Never heard of it. Then sounded- mumbled Chronic Fatigue Syndrome: like she'd seen that on the computer so now that makes sense.

BUT IT MAKES NO SENSE. Now we are again joined with that which does not attend to our Systemic unravelments.

then they want my records and tests. Got nothign to provide you really.

so my chart will say: SEID per my Primary Care Physician, who jumped up and down like he had discovered gold. And says he has : one other patient with that.

Need new names, brand new names. Names that don't result in people telling you: Go Take A Dance Class

 

[Rufous McKinney]

"SEID" is actually the word "intolerance" as the troublemakers

And yes that word is rather a problem as you point out. Like its an "opinion" like a thought, NOT like a physicality.

Agreed CFS is useful for: avoidance maneuvering.

 

[1gooddog]

CFS cannot be topped as worst term ever, it helps me in one small sense, if i see a doctor or someone working in the field of diet/nutrition and they claim a supplement or dietary alteration helps "Chronic Fatigue" in their damn laundry list of claims I know to discount them because a competent doctor who vaguely knows about ME/CFS would know not to hijack that terminology and refer to someones temporary lethargy as being akin to our s***ty condition that generally affects our cognition as much as our locomotion and constitution.

SEID seems a vague improvement by virtue of not containing within it a pained trope/term as I mentioned above, I don't mind disorder vs syndrome as the people who have caused trouble for me don't focus on distinctions like that, they just confuse CFS with things like anemia, depression driven fatigue, low vitamin D and the like..
my smaller issue with "SEID" is actually the word "intolerance" as the troublemakers I mentioned are also the type to scoff at "Intolerance" - I could imagine them ROFL-ing and saying "so you think you are allergic to exercise?"

basically SEID seems *really* damn close to being a well serviceable term that describes a large enough part of our problem and commands a bit of authority as should be the case with something that can rob us of any type of social life or autonomy

I can relate to SEID. Fatigue is such a misnomer. Everybody can relate to fatigue (young mothers) but this is just so much more than that and very difficult to articulate. My involvement is full body, including mind, eyes, speaking, watching, chewing, heart, you name it. I also have unusual pain, and when at my worst, in the strangest places. I have yet to eat today as the mere thought of the process is exhausting. I can't even think about it let alone actually do it. Or even fix it. This stuff is full system involvement. I so enjoy being alone, I can't manage to think about being around people. For one thing I can't stand or sit more than a few minutes. Let alone carry on a conversation most of the time. And nobody "gets it". I finally allowed my very supportive, undemanding husband to purchase a small power scooter for me. Only because the one plan I have is to attend my oldest grandson's college graduation. A three day drive, in our camper van he is working so hard to ready for my utmost comfort. I can't bear to not try. If I do well we plan on visiting other areas besides Iowa and Nebraska. Hence the scooter. I can scoot into the grad ceremony in a large arena. I won't have to do stairs or walk. The odd thing is walking briskly does not exhaust me as much as slow walking or standing and sitting. With this dizziness it takes more effort to keep my balance. And also the riding may be difficult unless I have a good remission in the next 2 weeks. I use muscles while riding.
If I don't get to go to this grad, it will pain me immensely. Last year I had to miss his brothers high school graduation. Then when the weather warmed in June I felt better.
I hate this disorder, syndrome, disease. I have no life outside my bedroom and I just don't seem to care. I can't risk getting upset about something I can't do anything about but try to manage. It is what it is and being upset or depressed only makes things worse.

 

[1gooddog]

P.S. I don't see how people manage to shower. All that standing, bending, straightening. I bathe. I soak and rest to warm my muscles and ponder the day. I have safety grab bars.
Just sayin'
Think about it

 

[Rufous McKinney]

My involvement is full body, including mind, eyes, speaking, watching, chewing, heart, you name it. I also have unusual pain, and when at my worst, in the strangest places...

couldn't reply directly, too impaired!!

A possible lead on: pain in the strangest places...I get this stuff all the time, and I work with the Chinese protocols. They call it wind. And it feels exactly like that here. It blows in. It blows out. IBS-d is: wind. while we think of it as: loose stools, its full of actual AIR blasting out of their. My heel periodically feels like bubbles are being formed there. My back: feels like a giant air bubble aching at times also. And it all comes and goes. It moves around the body/wind like. There is also a cold deep pain in the bone. That is wind, also. So I got much of this to improve by going on the Tibetan Wind diet.

So you tell somebody your joints and pains and weird aches got way better because I stopped eating salads. And Kale actually is NOT a food. Your teeth will thank you. So its basically: Bone Broths with heavy bones (beef, lamb); sheep cheeses (heavy sheep, who don't leap about like goats do); root vegetables (rooting downward energetically); no bitter greens (yeah, no Kale). Oily, warm cooked foods.

 

[Stretched]

... hate this disorder, syndrome, disease. I have no life outside my bedroom and I just don't seem to care. I can't risk getting upset about something I can't do anything about but try to manage. It is what it is and being upset or depressed only makes things worse.

I went to check on my stooped-over 93-year-old mother... . She said “stop worrying, everything I need to be happy is right here between my ears... .”

 

[1gooddog]

I went to check on my stooped-over 93-year-old mother... . She said “stop worrying, everything I need to be happy is right here between my ears... .”

So true. And like I have said, manage and don't worry. My Gone With The Wind mantra. Frankly my dear, I don't give a damn. But that doesn't mean I like it. I just don't care.

 

[EtherSpin]

P.S. I don't see how people manage to shower. All that standing, bending, straightening. I bathe. I soak and rest to warm my muscles and ponder the day. I have safety grab bars.
Just sayin'
Think about it

got no safety bar stuff on my bath and I am a little more phobic of people waltzing into the bathroom cause doors not frosted and Bath makes no noise to indicate its occupied

I apply gel strategically with a flannel when just standing in bathroom - get my shaving done (head as well as face + neck) for a few days then test how cool water I can tolerate initially hopping under in the shower and use minimal movements to wash soap away whilst agitating it with sponge for better washing then as final phase i grit teeth and direct shower head at my abdomen and keep adjusting tap slowly until I can do about 30 seconds at the coldest temp possible in the (possibly erroneous ?) belief that this will re-constrict big blood vessels in the abdomen and help avoid post shower crash ?


If i do this and then go sleep for the night Im generally ok the next day. back when i was still using warm water and applying soap in the shower itself I would be stuck on the couch (too dizzy and faint to stand) for 4 to 6 hours and would need someone to bring me drinks

 

[1gooddog]

got no safety bar stuff on my bath and I am a little more phobic of people waltzing into the bathroom cause doors not frosted and Bath makes no noise to indicate its occupied

I apply gel strategically with a flannel when just standing in bathroom - get my shaving done (head as well as face + neck) for a few days then test how cool water I can tolerate initially hopping under in the shower and use minimal movements to wash soap away whilst agitating it with sponge for better washing then as final phase i grit teeth and direct shower head at my abdomen and keep adjusting tap slowly until I can do about 30 seconds at the coldest temp possible in the (possibly erroneous ?) belief that this will re-constrict big blood vessels in the abdomen and help avoid post shower crash ?


If i do this and then go sleep for the night Im generally ok the next day. back when i was still using warm water and applying soap in the shower itself I would be stuck on the couch (too dizzy and faint to stand) for 4 to 6 hours and would need someone to bring me drinks

Glad you have found a work around. We do have grab bars picked up very cheap at thrift stores. Also have a solid wood door and nobody but the two of us in the house. I need the hot water and a soak, I can't do cold at all. Could you hang a curtain over the glass on the door? I get the post bath crash. I have at times barely made it to the bed 10 ft away before I went down.
Hang in there. We have to and we have great people to talk to who actually understand.

 

[PhoenixDown]

and a Japanese study showed that there is chronic neuroinflammation in the brains of ME/CFS patients.

That was a study done on Chronic Fatigue patients not ME. The results don't apply to ME patients.

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disease characterized by chronic, profound, disabling, and unexplained fatigue.

SEID is the best name in my opinion. "ME" often doesn't return relevant Google search results. "ME is a delusion" for example, doesn't return relevant results. SEID describes exertion being harmful.

 

[Learner1]

That was a study done on Chronic Fatigue patients not ME. The results don't apply to ME patients.

SEID is the best name in my opinion. "ME" often doesn't return relevant Google search results. "ME is a delusion" for example, doesn't return relevant results. SEID describes exertion being harmful.

Can you please explain the difference between ME and CFS? Are there different diagnostic tests? Different treatments? Different ICD10 codes?

Jarred Younger found neuroinflammation in ME/CFS patients - see attached. Then there's this:

https://pubmed.ncbi.nlm.nih.gov/30617782/

 

[Hip]

That was a study done on Chronic Fatigue patients not ME. The results don't apply to ME patients.

Looks like patients recruited in this study satisfied both the ICC and the CDC 1994 criteria. So they were ME patients.


In any case, there is not much to suggest that chronic fatigue syndrome and myalgic encephalomyelitis are different diseases. They may have different names, and different diagnostic criteria, but there's not much evidence to suggest that the patients these criteria select have different illnesses.

Certainly though we may find in future that ME/CFS has subsets with different disease pathophysiologies.



The disease of CFS was likely created because it allowed insurance companies in the US to withhold disability payments to ME/CFS patients. Whereas the original ME was defined as a purely neurological disease in its ICD classification, CFS is defined as a disease which can have psychological causes, and has its own separate ICD code.

I believe you can't get a diagnosis of ME in the US, because the ICD code for CFS is always used, never the ICD code for ME. This gets insurance companies off the hook, as disability insurance companies do not have to pay support for long-term mental health conditions,

Creating this supposed new disease of CFS, and defining it to have possible psychological causes, this allowed insurance companies to withhold disability support, saving insurance companies billions.

 

[Learner1]

I believe you can't get a diagnosis of ME in the US, because the ICD code for CFS is always used, never the ICD code for ME.

I see a top specialist, who diagnosed me with ME/CFS, but uses ICD 10 code R53.82 for me and other patients, rather than G93.3, post-viral fatigue syndrome, which is supposedly the correct one.. But, many of us did not have a specific triggering viral event, so it's not appropriate.

It does allow investigations into causes of the fatigue, so that tests are usually paid for by health insurance. One notable exception is Aetna, who manages to exclude most of the tests and treatments I've found to be useful in uncovering treatable aspects of this disease:

http://www.aetna.com/cpb/medical/data/300_399/0369.html

This does present problems, as the policy for US Social Security Disability requires tests that are on Aetna's disallowed list.

As for US employer-based disability insurance, it is true most will cut a patient off after 24 months if the disability is mental health related. Part of the evidence they look for his weather patients have been prescribed psychiatric drugs. But, a diagnosis of R53.82 is not necessarily looked at as a mental health diagnosis.

However, if you look at the range of issues discussed on this site that various ME/CFS patients have, it becomes very clear that this is not a diagnosis of exclusion anymore, and that patients typically have a number of other ICD-10 codes, which are able to be submitted for disability purposes.

But, looking at the original question, most ME/CFS patients in the US refer to themselves as having ME/CFS, though there is no specific ICD-10 code that covers all of us. It's extremely uncommon for anyone here to say they have ME - this seems to be more of a geographic thing, with patients in the UK using that terminology, while some patients in the US may describe themselves as having CFS for short, with myalgic encephalomyelitis being strange and unpronounceable. More experienced patients, aware of the history, will usually refer to themselves as having ME/CFS. I've never heard a patient refer to themselves as having SEID, or a doctor here in the US giving that diagnosis.

 

[Hip]

I see a top specialist, who diagnosed me with ME/CFS, but uses ICD 10 code R53.82 for me and other patients, rather than G93.3, post-viral fatigue syndrome, which is supposedly the correct one.. But, many of us did not have a specific triggering viral event, so it's not appropriate.

Yes, my understanding is that R53.82 Chronic Fatigue, Unspecified (a synonym for chronic fatigue syndrome) is often used in the US, in lieu of G93.3 Postviral Fatigue Syndrome / Benign Myalgic Encephalomyelitis (this is myalgic encephalomyelitis).

There are other options also available too, such as F48.0 Neurasthenia, which like R53.82 can be used when you want to suggest the disease may be a psychologically-caused mental health condition.


Prof Peter White would do consultancy work for disability insurance companies, and advising them how they can withhold disability support by cleverly using ICD disease classifications which imply a psychological cause. Some of Peter White's written advice to insurance companies can be seen in this post.


The reason ME/CFS became such a problem for disability insurance companies is because in the 1980s, there was an unexplained massive increase in the incidence of ME/CFS, with the number of new cases appearing increasing by at least 5 times. So suddenly these insurance companies had a huge increase in ME/CFS disability claims, and they may have gone bankrupt had they not come of with this ruse of saying ME/CFS is "all in the mind".

 

[Learner1]

I've never seen F48.0 used in anyone.

There's been a lot of progress since the 1980s, and my employer disability did ask for specific ICD-10 codes, but I made sure to provide them with 16 of them, and they sent me to an independent medical examiner who was very aware of the Lake Tahoe outbreak who quickly agreed that I had a medical problem.

This is the US version of G93.3:

https://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.3

I I'm wondering if I haven't seen it used by doctors because they don't want their patients pigeonholed, and they want the latitude to be able to investigate causes of the fatigue, and that's why they use R53.82 which gives them more latitude to order tests and treatments. There seems to be no suggestion from what I've seen that it's used as a psychiatric diagnosis.

 

[Hip]

I'm wondering if I haven't seen it used by doctors because they don't want their patients pigeonholed, and they want the latitude to be able to investigate causes of the fatigue, and that's why they use R53.82 which gives them more latitude to order tests and treatments. There seems to be no suggestion from what I've seen that it's used as a psychiatric diagnosis.

It would be interesting to ask your doctors why they do not use G93.3 Myalgic Encephalomyelitis. My guess is that they are not allowed to; that if they used this code, it might be rejected by US health insurance companies.


There was no scientific reason to create this duplicate disease of CFS after the 1984 Lake Tahoe outbreak. ME was already an established disease, being named and described after the 1955 Royal Free Hospital outbreak.

Some scientists at the CDC who were investigating the Lake Tahoe outbreak pointed out that the disease looked identical to ME; but they were ignored, and CFS was created.

The only reason I can see for the creation of CFS is a political one, to help prevent insurance companies going bankrupt.


Journalist Hillary Johnson, who is highly critical of the CDC, says this about the CDC's creation of the chronic fatigue syndrome name:

https://twitter.com/i/web/status/1059084607080022016

https://twitter.com/i/web/status/1273407397697130497