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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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You certainly gave it your best shot. About 25% of Dr. Lerner's patients were non-responders altho the data suggested that some of them simply need to be on the drugs more. You cant say that about you. (You didn't have an extra infection did you?)
I think Dr. Lerner's approach will have differing effects on different people; what I was impressed by was the number of people who nearly fully recovered (@30%) and the number of people who very significantly recovered. I've never seen numbers that high before; this treatment regime, while long and expensive, really does appear to work very well for a good chunk of CFS patients.
Along iwth them will be people who responded but in a milder way and those who didn't respond at all. I hope more of Dr. Lerner's patients will comment on how they're doing or did.
Sasha
if you have any luck with NHS GP/Consultants can you let us know about it, and what papers helped you with them. [...]
have you had any luck with any NHS testing.
What journal is this study published in Cort.I cant find any scientific data thus far.I take it that it is retrospective and not a prospective study.Is there any statistical analysis done or anyobjective data apart from self reporting?
Patients and methods: Data were collected at physician visits every 46 weeks from 142 CFS patients at one clinic from 2001 to 2007. To be included in this study, patients had to be followed for at least six months. The data captured included over 7000 patient visits and over 35,000 fields of information. Severity of fatigue was monitored by a validated Energy Index Point Score<sup></sup> (EIPS<sup></sup>). Baseline and follow-up serum antibody titers to EBV, HCMV, and HHV6, as well as coinfections with Borrelia burgdorferi, Anaplasma phagocytophila, Babesia microti, and antistreptolysin O, 24-hour ECG Holter monitors, 2D echocardiograms, cardiac dynamic studies, symptoms, and toxicity were captured and monitored. International criteria for CFS plus a specifically designed CFS diagnostic panel were used.
Results and conclusions: The Group A herpesvirus CFS patients (no coinfections) returned to a near-normal to normal life (P = 0.0001). The long-term EIPS value increased (primary endpoint, P < 0.0001) with subset-directed long-term valacyclovir and/or valganciclovir therapy. Secondary endpoints (cardiac, immunologic, and neurocognitive abnormalities) improved or disappeared. Group B CFS patients (herpesvirus plus coinfections) continued to have CFS.
What journal is this study published in Cort.I cant find any scientific data thus far.I take it that it is retrospective and not a prospective study.Is there any statistical analysis done or anyobjective data apart from self reporting?
I just feel like sitting down and crying...the success of this long study has given me added hope! (thank you cort for posting it in it's entirety!)
Sasha [...] have you had any luck with any NHS testing.
The paper is not scientific in any way i,m sorry to sayGood point Sasha. Dr. Lerner's study should speak for itself. He really had very little to do with the study itself - he saw his patients and inputted his data and then this group of volunteers put the data into the computer and analyzed it. They looked at 10 years of data - which to me means its very solid. I'm sure the research community will want a placebo-controlled, double blinded treatment trial but if I understood it correctly, all of his patients are in there - it really seems like a solid piece of work.
The paper is not scientific in any way i,m sorry to say
Gerwyn -"The paper is not scientific in any way"
Best to follow the links above and comment there, if talking about Cort's article, I reckon.Cort-I just read your very informative May 24th, 2010 11:15 AM article. Very nice work. In the article did you mean anti-viral instead of anti-retroviral?
I didn't notice when this was first posted on Co-Cure but the full text is available for free there.