Helpful links and info for diagnosis and basic treatment of CFS/ME

[Jarod]

Chronic Fatigue Syndrome​

A Roadmap For Testing And Treatment​

Introduction
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME), is a neurological condition characterized by cognitive dysfunction, mood disorders, fatigue, post-exertional malaise, and many more symptoms.

The following guidelines are an aid to determining: (1) whether you have chronic fatigue syndrome, and if so: (2) which laboratory tests should be performed to identify the infections and other causal factors that underpin your ME/CFS, and: (3) what treatments you can follow to address these infections and causal factors, and treat the symptoms that arise from them.

https://sites.google.com/site/cfstestingandtreatmentroadmap/

 

[Jarod]

Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition [Kindle Edition]


This one-of-a-kind reference – now completely revised and updated – includes over 100 effective treatments, from antivirals to vitamins, as well as locations of specialists and clinics, Internet ordering information, and national, local, and international CFS/ME organizations. New and expanded sections include doctors' protocols and research on the causes and mechanisms of the illness, all written in concise, easy-to-understand language.

Every aspect of the illness is thoroughly examined, from diagnosis to an in-depth discussion of symptoms, from traditional to alternative therapies to essential coping strategies. The new edition contains chapters for those coping with multiple chemical sensitivities and dietary restrictions, as well an expanded section on children and adolescents with CFS/ME. Chronic Fatigue Syndrome: A Treatment Guide, Second Edition, remains the most comprehensive reference guide on this disease.

http://www.amazon.com/Chronic-Fatigue-Syndrome-Treatment-ebook/dp/B009B9X36Y

 

[Jarod]

Genetic defects as a cause of ME / CFS (Chronic Fatigue Syndrome) and impaired detoxification capacity

The speaker will be Dr. Richard Van Konynenburg, independent researcher with a science background, see below, which for 15 years has been dedicated to research on chronic fatigue syndrome where the load of toxins such as mercury have been shown to be one of the reasons.Rich Van K Video Sweden 2011

 

[Jarod]

Documents written by Rich Van Konynenburg


This Wiki page contains a collection of documents written by Rich Van Konynenburg, Ph.D., an independent researcher who has studied ME/CFS since 1996.

Rich has proposed the Glutathione DepletionMethylation Cycle Block hypothesis for the pathogenesis and pathophysiology of ME/CFS and has suggested treatment based on it.

This treatment was tested in a clinical study conducted by Neil Nathan, M.D., and Rich, and was found to produce significant benefit for more than two-thirds of the patients in the study.

The documents on this Wiki page are in the approximate chronological order in which they were written. Since Richs thinking has been modified over time as more has been learned, where there are conflicts the more recent document should be given precedence.

http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/

 

[Jarod]

Cpnhelp.org: A website devoted to the understanding and treatment of Chlamydia Pneumoniae, an infectious bacteria implicated in a number of human illnesses. Cpnhelp.org is a non-commercial, website run and supported by volunteers, and does not take monetary or other assistance from any other sources.

Chlamydia Pneumoniae (Cpn) has been implicated in such a wide variety of diseases that information about it's treatment and science is scattered about the web and tends to be focused on just one of these illnesses. We hope to be a central source of information, which will allow us to share findings and compare treatment responses across the variety of problems Cpn causes. Work by Charles Strattoni et al, extended by British physician David Wheldoni has formulated Combination Antibiotic Protocolsi (CAPi's) to treat the multiple life phases of Cpn and fully eradicate this persistent infection.

http://www.cpnhelp.org/

 

[xchocoholic]

Thanks Jarod. IMO the more possibilities pwcs know about the better. It at least gives us a fighting chance. The downside is that many pwcs are just too out of it to comprehend all this.

Here's some more info from another thread that linked to your first article. tc ... x

http://forums.phoenixrising.me/inde...-overview-of-cfs-and-treatments-for-it.23393/

 

[golden]

Spaghetti blinkin ' Junction ...

I found this ...

http://m.hfme.org/site/mobile?dm_pa...l=http://www.hfme.org/&fb_sig_network=fw#0032

 

[xchocoholic]

Great link Golden .. tx ... X

PS. I think I get the spagetti blinkin' junction reference too ... lol ...

HFME explains why:

• M.E. is not the same thing as 'CFS,' 'ME/CFS' or fatigue
• M.E. is not medically unexplained, vague, fatigue-based or untestable
• A diagnosis of 'CFS' is always a misdiagnosis
• 'CFS' is a bogus disease category created for the benefit of vested interest groups
• Everyone diagnosed with 'CFS' deserves a correct diagnosis finally - whether the disease they have is M.E. or, as is far more likely, something else entirely

 

[Bluebell]

I found this ...

http://m.hfme.org/site/mobile?dm_pa...l=http://www.hfme.org/&fb_sig_network=fw#0032

I recognize the name "Hummingbird" -- and also the name "Jodi" rings a bell in connection to it --

I think she wrote the highest-rated customer review on Amazon of Dr. Terry Wahl's nutrition book. I'll have a look over there...

Yes, this is it: http://www.amazon.com/review/R2LW87M7BQOUQE/ref=cm_cr_pr_viewpnt#R2LW87M7BQOUQE

 

[Bluebell]

Jarod has kindly invited me to replicate here a list that I posted on a thread of mine yesterday --

Below are some informational links that I have collected.​

​

Note: I cannot say whether any of the following material is accurate or not, or if it is accepted by the medical community/researchers/specialists/campaigners/patient groups/etc. -- I am just learning about this health condition! ​

​

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Dr. Rich van Konynenburg 2011 presentation in Sweden, part 1 - document http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_1R.pdf​

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Dr. Rich van Konynenburg 2011 presentation in Sweden, part 2 - document​

http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_2.pdf​

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Dr. Rich van Konynenburg 2011 presentation in Sweden - video​

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/​

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Dr. Rich van Konynenburg Revised Simplified Methylation Protocol (August 25, 2012 Revision) - forum posting​

[Apparently this was his last version of his protocol before his untimely death] http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/​

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Dr. Stephen Smith mindmap of MTHFR - document​

http://www.mindmeister.com/12694596/mthfr-related-health-problems​

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Dr. Ben Lynch - video​

http://www.seekinghealth.com/natural-health-video/methylation-defects-and-mthfr.html​

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Dr. Ben Lynch - podcasts (some are very recent - from June 2013)​

http://www.seekinghealth.com/learning-center​

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Dr. Neil Rawlins MTHFR protocol - document​

https://docs.google.com/viewer?url=http://www.rawlins.org/mthfr/MTHFR%20protocol.doc​

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Dr. Neil Rawlins - video​

http://www.methyl-life.com/a-doctor-explains.html​

http://www.renewashoe.com/medical/​

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Life Extension organization on some of the relevant supplements (discussed in the context of reducing homocysteine) - articles​

http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_02.htm?source=search&key=mthfr​

http://www.lef.org/magazine/mag2009...aking-You-Sick_01.htm?source=search&key=mthfr​

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Dr. Mark Hyman on glutathione - article​

http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html​

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Dr. Sarah Myhill (based in the United Kingdom) on the methylation cycle - article​

http://drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle​

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Dr. Amy Yasko Pathways Book - document​

http://www.holisticheal.com/media/downloads/autism-pathways-to-recovery-book.pdf​

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Dr. Amy Yasko Pathways Book's accompanying Workbook - document​

http://www.holisticheal.com/media/downloads/autism-pathways-to-recovery-workbook.pdf​

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Dr. Amy Yasko - 17 free documents​

http://www.scribd.com/DrAmyYasko/​

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NW Integrative Medicine on MTHFR - article​

http://www.nwhealthcare.net/index.php?id=64​

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Chris Kresser on B12 Deficiency, first article​

http://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences​

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Chris Kresser on B12 Deficiency, second article with simple protocol​

http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency​

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Dr. Bill Walsh on overmethylation and undermethylation - videos​

(Scroll down to find them - these videos are in the middle of the list of videos. I had problems linking to them directly here.)​

http://www.walshinstitute.org/Video.asp​

 

[Jarod]

Q. I have been suffering from Acid Reflux and Gastritis. Ive tried Manuka Honey which does help me plus ProBiota 12 Powder from the website . Is there something I'm doing wrong? Also my cholesterol numbers have been over 200 and cant seem to keep them at a normal range . The doctor tells me that it I have be taking cholesterol medication. I would rather go for natural products. Is there any suggestions that might help me?

A. For Gastritis: Test for Helicobacter pylori via the Urease Breath Test. More effective than the stool antigen test.

Heal the gastritis with L-Glutamine Powder by Seeking Health. In one liter of water, add 20 grams of L Glutamine and sip throughout the entire day between meals. Also eat more garlic, take Zinc Carnosine and consider Gastric Repair Complex by Biogenesis to help heal the ulcer and reduce the symptoms of acid reflux and GERD.

Continue Manuka honey between meals and the ProBiota 12 Powder. Make sure you take ProBiota 12 Powder after dinner and a potent dose of 1/2 teaspoon which is 200 billion beneficial bacteria.

Saccharomyces boulardii has also shown promise in eradicating H pylori. Give it a shot. Consider 1 capsule three times a day for two months then stop.

For Acid Reflux: Eat smaller, more frequent meals. Avoid spicy foods, gluten especially wheat, tomatoes, coffee, tea. Sleep with your bed elevated. Before meals, drink 1 tablespoon of apple cider vinegar in a half glass filtered water with 2 tablespoons of lemon juice. SIP slowly. Once feeling of warmth begins, stop. Then eat.

Once gastritis is healed and gone, and you still have acid reflux or GERD, then supplement with PreGestion by Seeking Health during meals to assist the breakdown of your food by adding stomach acid.

High Cholesterol: hard to say without seeing HDL and LDL levels. Reduce your risk of atherosclerosis by testing for Homocysteine, CRPhs and 5-MTHFR gene mutation. Also consider supplementing with HomocysteX by Seeking Health to reduce homocysteine, Flow Fx by Seeking Health to reduce fibrin and Active CoQH, soy free 50 mg Ubiquinol, by Seeking Health to support antioxidants and heart health.