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Will S.E.I.D. be accepted as (be proven to be) valid?

alkt

Senior Member
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uk
[QUOTE="alkt, post: 633644, member:T
I just erased myself and you with a self motivating pillow. A lot of junk on my "island" -- bed have minds of their own.

No, I do migraines very well on my own.

I am so sorry, I didn't mean to erase. It was a hopping ________ pillow. iz izn't rt now
where do you buy hopping pillows is part of an exercise therapy. im smiling. and now going to bed. another long day tomorrow.
 
Last edited:

redaxe

Senior Member
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301
having recently seen news/posts about the cost of ampligen i doubt many patients will truly benefit especially here in england n.i.c.e who decide which drugs will be paid for is not going to allow the prescribing of ampligen upset to a few during a trial period. going by present reports of it helping one in three who have had the E B V diagnosis . it does not look like the miracle cure that many people would like to believe but it might point the way to better medical treatments for M.E/C F S. sufferers. just looked at price of rituximab one thousand pounds for fifty mls infusions also not likely to get past n.i.c.e. s costing rules.
Yeah all the drugs that have been suggested so far have drawbacks. I guess what I was more getting at was that if we had a message like this in every government/medical clinic that mentions CFS/ME
"If patients are found to have elevated antibodies to EBV & the onset off illness co-incided with recent or previously severe mononucleosis ampligen can be prescribed"
Even if that only applied to as you say a fraction of the CFS/ME community it would not only help those patients a lot but would help to legitimise the illness. If a doctor reads about CFS/ME on the mayo clinic website and just finds the current suggestion for CBT/GET he's not going to be convinced that it's a real illness.
If we have guidelines stating where ampligen can be used I think it would really change perceptions a lot.

Heck why can't they even recommend doctors carefully trial their patients on Modafinil? You'd at least get some symptom relief that way. It's a life saver for many narcoleptics and gives them back some alertness and cognitive function.
 

alkt

Senior Member
Messages
339
Likes
684
Location
uk
Yeah all the drugs that have been suggested so far have drawbacks. I guess what I was more getting at was that if we had a message like this in every government/medical clinic that mentions CFS/ME
"If patients are found to have elevated antibodies to EBV & the onset off illness co-incided with recent or previously severe mononucleosis ampligen can be prescribed"
Even if that only applied to as you say a fraction of the CFS/ME community it would not only help those patients a lot but would help to legitimise the illness. If a doctor reads about CFS/ME on the mayo clinic website and just finds the current suggestion for CBT/GET he's not going to be convinced that it's a real illness.
If we have guidelines stating where ampligen can be used I think it would really change perceptions a lot.

Heck why can't they even recommend doctors carefully trial their patients on Modafinil? You'd at least get some symptom relief that way. It's a life saver for many narcoleptics and gives them back some alertness and cognitive function.
that is a very good point. but here in the uk they won't even guess at a diagnosis until you have been very ill for six months.
 

redaxe

Senior Member
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301
that is a very good point. but here in the uk they won't even guess at a diagnosis until you have been very ill for six months.
Yeah I think there is a definite disadvantage in telling a doc you have CFS. If you're struggling with poor cognitive dysfunction in work/study your probably best to tell the doc you have 'persistent daytime tiredness' and convince them to trial you on a stimulant like provigil. At least you'll get something that might help you. That won't work for everyone but for mild CFS/ME it might help you manage things a bit better providing you don't push yourself far enough to crash.
 

alkt

Senior Member
Messages
339
Likes
684
Location
uk
Yeah all the drugs that have been suggested so far have drawbacks. I guess what I was more getting at was that if we had a message like this in every government/medical clinic that mentions CFS/ME
"If patients are found to have elevated antibodies to EBV & the onset off illness co-incided with recent or previously severe mononucleosis ampligen can be prescribed"
Even if that only applied to as you say a fraction of the CFS/ME community it would not only help those patients a lot but would help to legitimise the illness. If a doctor reads about CFS/ME on the mayo clinic website and just finds the current suggestion for CBT/GET he's not going to be convinced that it's a real illness.
If we have guidelines stating where ampligen can be used I think it would really change perceptions a lot.

Heck why can't they even recommend doctors carefully trial their patients on Modafinil? You'd at least get some symptom relief that way. It's a life saver for many narcoleptics and gives them back some alertness and cognitive function.
just checked modafinil.it is not recommended for people with any physc disorder. and guess what here in the uk the shrinks have persuaded a lot of the medical profession that m.e is a ll in our head. i personally do not suffer with needing more sleep main problem being pain and brain function.
 

alex3619

Senior Member
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Logan, Queensland, Australia
Is that the point of a biomarker? that even in times that some symptoms are milder due to treatments, that patients with mild SEID/ME would still be picked up as having it by a biomarker test?
With waxing and waning symptoms, and suppression of symptoms by good management or working treatments, its easy to be misdiagnosed under any definition, or to fail to diagnose. Biomarkers are good for that, but a good treatment might lower any particular biomarker to below whatever threshold they accept.

The big things for biomarkers are these:

First, patients who are subclinical, who cannot be diagnosed, will suddenly be diagnosed. Then numbers of patients will climb.

We will probably see ME fracture into two diseases, and CFS will be revealed as a hodge podge of different diseases.

We might, if we are lucky, also have a treatment biomarker. That is we can use it to track treatment progress.
 

Research 1st

Severe ME, POTS & MCAS.
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With waxing and waning symptoms, and suppression of symptoms by good management or working treatments, its easy to be misdiagnosed under any definition, or to fail to diagnose. Biomarkers are good for that, but a good treatment might lower any particular biomarker to below whatever threshold they accept.

The big things for biomarkers are these:

First, patients who are subclinical, who cannot be diagnosed, will suddenly be diagnosed. Then numbers of patients will climb.

We will probably see ME fracture into two diseases, and CFS will be revealed as a hodge podge of different diseases.

We might, if we are lucky, also have a treatment biomarker. That is we can use it to track treatment progress.

Maybe we all have ME, but ME comes in stages, e.g the neuroinflammation and it can target different areas of the body?

Lets go with theoretical outcomes:

*Pathogen unknown causes ME/CFS = HERV activation. (Affects people in different ways due to gene expression and HERV's switched on). Neuro damage occurs, most develop Autonomic damage (Dysautonomia).

*Pathogen unknown + Antibiotic resistant borellia ('Chronic Lyme') + loss of PrPC = very severe ME. All develop severe Dysautonomia and become housebound but tend to last out.

*Pathogen unknown + loss of PrPC + gene defect = fatal ME

There has to be reason those who die of 'CFS' are usually gone by the age of 30. Puberty starts at around 10-15 for girls and boys. Within 15+ years these people are dead. WTF?! There must be a pathogen that utilises this flood of androgens into tissue (where pathogen unknown hides) which causes a terrible effect.

If we can find the HERV's (multiple exist) we can try antiretrovirals, like in MS trials.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
762
Likes
2,528
that is a very good point. but here in the uk they won't even guess at a diagnosis until you have been very ill for six months.
Hello. Indeed,.it's very hard to get an ME diagnosis in the UK now. 100% correct.
But referring to CFS or CFS/ME, then no,pseudo ME (CFS/ME) is an easy diagnosis to obtain, and that's the problem!

Here is how you get diagnosed with CFS/ME, that isn't ME, it's a piece of cake:

Report to a doctor:

1) Unexplained chronic fatigue of 6 months, not relieved by rest,or explained by conventional standardised blood tests. (Rule out Thyroid, Diabetes, Cancer etc).

2) Feeling worse after doing something (subjective experience also reported by the mentally ill).

3) One or more symptom. (Headache, Sore Throat, Aches in muscles etc). None needs to be proven. Just say it.

That's it!

UK CFS/ME and Fukuda CFS (CDC CFS in USA) requires:

No evidence of neurological dysfunction
No evidence of immune activation.
No evidence of cardiac or respiratory problems
No evidence of hormone problems.
No evidence of inflammation.
No evidence of OI
No evidence of Cognitive Dysfunction.

Actually, no evidence of anything at all wrong with you. For someone who is ill, that's a disaster, you get lumped in with people, who don't have your disease, and these people (in research) won't respond in the same way you do.
For research, treatment, this is a total disaster. However the CDC created this, so it's their responsibility legally for what happens to the patient, creating this reckless diagnosis of 'CFS' in a doctor's office.

Worse still, F48.0 Oxford CFS used by the British psych lobby, allows depression to be present at time of diagnosis. Thus you can be depressed and be diagnosed as a CFS/ME or ME sufferer in the UK. This is very 'useful' for NHS psychiatrists and psycholgists trying to convince NICE that 'ME' is CFS and CFS is Chronic Fatigue caused by a stress response of abnormal thinking that needs CBT and GE. This the becomes 'evidence based' and forms the basis of approved neglect (NICE guidelines for CFS/ME in the UK) if, you have a serious disease and don't have CFS/ME, but ME or organic disease based CFS. (Remember, CFS is called 'unexplained chronic fatigue of unexplained cause'.). That is all. Hence it's not serious, as no doctor can explain it (using the wrong tests).

Sadly, SEID is identical to CFS in terms of no evidence needed to be an 'SEID' sufferer either. :(
All you need to do in SEID is report either Cognitive Dysfunction or Orthostatic Intolerance (both hallmarks of ME)...but critically you don't need any proof of this! Just say you have it, or be told you have it! That won't help research, won't help design drugs, and won't help the patients gain legitimacy.

So no wonder some doctor's laugh at SEID as a serious medical 'disease'. Nothing is actually serious in medicine, without evidence (tests). This is the whole point of seeing a doctor to for your health and not a snake oils salesperson selling CBT, that will never erase the mind, if a disease process is present that is the cause.

Sadly in CFS and ME, for many (not all because of the diagnosis criteria), there is a very serious disease present.
This will carry over into SEID. You'll have SEID and actually be seriously ill. Very dangerous as you're still trapped in a diagnostic and research well, with no way to climb out.

SEID doesn't make research more accurate, or more accurately diagnose the patient. But that's how the IOM wanted it, so we got it. If we'd had the ME experts, we'd not be in this mess, but the IOM prevented this, so history will judge those on the IOM panel if it was wise to remove the ME experts and dream up SEID to replace a neuroinflamamtion disease, that now doesn't need any evidence of it being present, to have 'it'.

As Homer SImpson says. Doh! And as the private heath care industry who still won't have to pay out millions in disability claims fo these 'SEID' people, they say, 'Yo!'.
 

alkt

Senior Member
Messages
339
Likes
684
Location
uk
Hello. Indeed,.it's very hard to get an ME diagnosis in the UK now. 100% correct.
But referring to CFS or CFS/ME, then no,pseudo ME (CFS/ME) is an easy diagnosis to obtain, and that's the problem!

Here is how you get diagnosed with CFS/ME, that isn't ME, it's a piece of cake:

Report to a doctor:

1) Unexplained chronic fatigue of 6 months, not relieved by rest,or explained by conventional standardised blood tests. (Rule out Thyroid, Diabetes, Cancer etc).

2) Feeling worse after doing something (subjective experience also reported by the mentally ill).

3) One or more symptom. (Headache, Sore Throat, Aches in muscles etc). None needs to be proven. Just say it.

That's it!

UK CFS/ME and Fukuda CFS (CDC CFS in USA) requires:

No evidence of neurological dysfunction
No evidence of immune activation.
No evidence of cardiac or respiratory problems
No evidence of hormone problems.
No evidence of inflammation.
No evidence of OI
No evidence of Cognitive Dysfunction.

Actually, no evidence of anything at all wrong with you. For someone who is ill, that's a disaster, you get lumped in with people, who don't have your disease, and these people (in research) won't respond in the same way you do.
For research, treatment, this is a total disaster. However the CDC created this, so it's their responsibility legally for what happens to the patient, creating this reckless diagnosis of 'CFS' in a doctor's office.

Worse still, F48.0 Oxford CFS used by the British psych lobby, allows depression to be present at time of diagnosis. Thus you can be depressed and be diagnosed as a CFS/ME or ME sufferer in the UK. This is very 'useful' for NHS psychiatrists and psycholgists trying to convince NICE that 'ME' is CFS and CFS is Chronic Fatigue caused by a stress response of abnormal thinking that needs CBT and GE. This the becomes 'evidence based' and forms the basis of approved neglect (NICE guidelines for CFS/ME in the UK) if, you have a serious disease and don't have CFS/ME, but ME or organic disease based CFS. (Remember, CFS is called 'unexplained chronic fatigue of unexplained cause'.). That is all. Hence it's not serious, as no doctor can explain it (using the wrong tests).

Sadly, SEID is identical to CFS in terms of no evidence needed to be an 'SEID' sufferer either. :(
All you need to do in SEID is report either Cognitive Dysfunction or Orthostatic Intolerance (both hallmarks of ME)...but critically you don't need any proof of this! Just say you have it, or be told you have it! That won't help research, won't help design drugs, and won't help the patients gain legitimacy.

So no wonder some doctor's laugh at SEID as a serious medical 'disease'. Nothing is actually serious in medicine, without evidence (tests). This is the whole point of seeing a doctor to for your health and not a snake oils salesperson selling CBT, that will never erase the mind, if a disease process is present that is the cause.

Sadly in CFS and ME, for many (not all because of the diagnosis criteria), there is a very serious disease present.
This will carry over into SEID. You'll have SEID and actually be seriously ill. Very dangerous as you're still trapped in a diagnostic and research well, with no way to climb out.

SEID doesn't make research more accurate, or more accurately diagnose the patient. But that's how the IOM wanted it, so we got it. If we'd had the ME experts, we'd not be in this mess, but the IOM prevented this, so history will judge those on the IOM panel if it was wise to remove the ME experts and dream up SEID to replace a neuroinflamamtion disease, that now doesn't need any evidence of it being present, to have 'it'.

As Homer SImpson says. Doh! And as the private heath care industry who still won't have to pay out millions in disability claims fo these 'SEID' people, they say, 'Yo!'.
impressively well put i think that answers the argument about sied as comprehensively as possible.even for my tired brain.