CFIDS/ME diagnosis breakthrough

I think this is the most on-topic diagnosis tool I've seen.

Diminished Cardiopulmonary Capacity During Post-Exertional Malaise<

and here's a nice summary of the legal implications of the test

Legal and Scientific Considerations of the Exercise Stress Test<

 

There is a disease characterized by protracted recovery from exertion. It doesn't have a name. It used to be what was meant by "CFS", then by "CFIDSi".

There is a continuous push by the CDC and others to widen -- and thereby dilute -- the definition of CFIDSi. They've proved repeatedly that if you throw "anyone with protracted fatigue" into the definition of the term, then you can "cure" most of the (added) sufferers with Graded Exercise and CBT. It is a scam, but what's new in that?

However, this back-to-back test of cardiopulmonary capacity gets right at the heart of the problem -- protracted recovery from exertion -- measures that, and provides pretty tough-to-fake documentation of the symptom.

I am going to ask my doctor to perform this measurement. I don't want or need disability compensation, thank God. I could have, though, if I hadn't found an effective treatment. I want him to measure this so that I can measure my progress.

Oooh, found a full-text on the legal issues<!

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

If anyone happens to live near Calgary, there's a study< underway to put some additional rigor behind this diagnostic technique.

 Brian MacIntosh normally works with high-performance athletes, but the means of measuring O2 consumption, lactic acid buildup, etc. are the same. It will be great to have objective proof of the effects of CFSi/CFIDSi/ME.

Ron

On CAPi for CFS starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Thanks Ron,

the first notable "outbreak" of ME symptoms occurred about 1975 in Lake Tahoe.  The CDC rolled in, said poppycock & covered it up.  They decided to call it Chronic "Fatigue" to further minimize the illness.  At that time people were going down with unrelieved exhaustion all over the resort town.  Some died, some by their own hand, due to the lack of help & psycho babble labels they received.

We have come along way since then; though, it is amazing, there are many who don't believe this to be an illness!  I would like them to walk in my shoes for a day or two & see what they "think".

Happy Easter everyone.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8th Pulse 2 X 375 mg 3day,375 2 d

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

I want to give this a bump. It is HUGE that these people can objectively measure the slow recovery from exertion that is the hallmark of this disease.

 Pacific Fatigue Lab is doing just that: measuring your recovery speed in objective terms. <

Again, this could be a breakthrough in diagnosis. Some people are chronically fatigued and have this unnamed disease, others are chronically fatigued for some other reason. If we can prove who has this disease, and measure its severity, then we can start throwing out the ineffective treatments and bad studies that don't really look at this disease.

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

sharonk868 is a spammer and will be deleted shortly. DO NOT RESPOND.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Ruth, could you remove the unclosed boldface tag, in your signature? It's making all the posts after yours show up bolded. Thanks. (The only reason this post isn't boldfaced is that I included a "turn off boldface" tag at its start.)

Norman, you might try sending a pmessage.  Ruth is off the website much of the time now and this post may be well down the list when she returns.  I am also trying to see if responding directly to you changes the pattern at all.

I will then respond in general and see if it returns again if it does happen to be dropped. 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Norman, Ok, the direct reply to you worked now lets see if the pattern has been changed.

Edit - Seems to be gone now, until she posts with it again.  I'll leave the pmessage for her up to you to explain why and what your asking her to change.

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

thanks Ron again!  I just saved the site that does the testing.   Does anyone know of any other lab that is doing that testing as I am in  AZ at the moment.  I am presently battling wiht my LTD insurer & this could shut them up for a while!!

 

peace

r

 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

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