A Summary of Leading CFS/ME Protocols: Part 1 ~ Tool

The CFS menu

So you’ve got CFS/ME?  You’re probably hungry to get well. But whats on offer?

To satisfy your appetite I present Part 1 of the Recovery Path Menu. Containing a range of healing protocols from leading CFS/ME Specialists around the world. Feast upon their ideas! Chew through their assumptions! But be sure to send back anything that seems under cooked. And always, always tip the waiter…

Today’s Specials:

  • This information evolves and these protocols may already be past their used by date (you would hope so in the ever developing field of CFS/ME).
  • In months to be come it will be fascinating to see how just XRMV and its other viral cousins factor into each of the protocols below.
  • Don’t overwhelm yourself all at once, digest this slowly.
  • Just because its not listed does not mean it doesn’t exist. I just haven’t come across it.
  • Most of these are a comprehensive approaches to recovering from CFS/ME. But each one has specific focus which defines them.

Bon Appétit!

P.S. These are in no particular order. Each approach has it’s own strength and weaknesses. Personally I think it’s essential to listen to both your intuitive and rational mind when making any decision about choosing a health care practitioner.

Ask questions, be clear about your expectations and make sure you’re really being heard.

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Niki Gratrix protocol

Overview– Niki Gratrix is a nutritional therapist and coach based in the UK who helps people optimise their levels of energy and wellbeing. Since helping to found the Optimum Health clinic in 2005 she has had a strong interest in working with people to recover from CFS/ME.

Focuses primarily on: Holistically treating every aspect of the individual with a focus on nutritional and psychological well being.

Method: A comprehensive approach using a wide range of alternative therapies.

Estimated time until clinical results:  Between 6-18 months for deep-seated and lasting results.

Available Published Studies: None currently available (that I know about).

Publications: Niki has her own with a number of interesting articles available here. Here is a link to video of Niki being interviewed on Conscious Tv.

My 2 cents: Niki is a very committed and knowledgable practitioner. She takes a truly comprehensive approach when composing her protocols for individuals and operates from a place of heart. Her ongoing education reflects her commitment to stay on the cutting edge of complementary medicine.

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Dr Kenny De Meir Leir’s protocol

Dr Kenny De Meir Leir

Overview- Dr Kenny De Meir Leir is a Belgian Doctor specialising in the treatment of CFS/ME. He was originally a professor of physiology but went on to become one of the leading international researchers of CFS/ME consulting with around 4000 patients each year.

Focuses primarily on: Restoration of the Gastrointestinal system

Method:

– Th1 & Th2 rebalance
– Restoration of hormonal balance
– Restoration of correct intestinal flora
– Decrease in PKR’s & restoration of immune competence.

Estimated time until clinical results: 6 months

Available Published Studies: Scientific papers available here. However they are not so reader friendly.

Publications: Supposed to be currently writing a book.

Further info: 20 minute video Interview with De Meirleir explaining his view.

Good article summarising the De Meir Leir approach (from 2007 so a little dated)

My 2 cents: This chap has been in the game for a long time. He is intelligent, knowledgeable and is an interesting mix between researcher and clinician. Is experimental in his approach to treatment and makes use of a wide range of pharmaceuticals.

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Dr Jacob Teitelbaum’s SHINE protocol

Dr Jacob Teitelbau

Overview: Dr Jacob Teitelbaum is an American physician who himself recovered from CFS and Fibromyalgia many years ago. He has since spent his medical career researching and treating CFS through a methodology which he has developed and evolved over time called the SHINE protocol.

Focuses primarily on: Hypothalamus dysfunction

Method: Application of his protocol focusing on Sleep-Hormones-Infections-Nutrition and Exercise

Estimated time until clinical results: 6 months

Available published research: Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia—A Randomized, Double-Blind, Placebo-Controlled, Intent to Treat Study

Publications: From Fatigued to Fantastic (Book)

Further info: See his website here and a short video explaining his treatment approach here

My 2 cents: The SHINE protocol is a good basis to work from, wrapped up in slick marketing with a catchy name. Personally I really dig this Doctors style and he wins big points for a quote in his book from Joseph Campbell advising you to ‘follow your bliss’ in life.

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Dr Sarah Myhill’s protocol

Dr Sarah Myhill

Overview: Dr Sarah Myhill is an English doctor who has specialised in chronic health disorders and specifically CFS/ME since the 1980’s. She is secretary of the British Association of Ecological Medicine.

Focuses primarily on: Mitochondrial  dysfunction (the little furnace’s in energy cells)

Method: A comprehensive approach focusing on pacing, diet, avoiding infections and supplementation (specifically around Mitochondria). Article available here.

Estimated time until clinical results: 1 year

Available Published Studies: Chronic fatigue syndrome and mitochondrial dysfunction

Publications: CFS Book (download for free here)

Further info: Dr Myhills website (see fatigue section for CFS/ME)

My 2 cents: A truly committed woman with a sensible and comprehensive approach to recovering from CFS/ME. I’m endeared by the picture on her website where she is happily leaping over some hedges on the back of a horse. Any happy horse riders are fine by me.

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The Optimum Health Clinic Protocol

Alex Howard

Overview – This is a clinic based in London that specialises in the treatment of CFS/ME also offering their services internationally through long distance protocols. Set up by Alex Howard who himself recovered from CFS and staffed by professionals who have all overcome the condition themselves.

Focuses primarily on: Nutrition and Psychology.

Method: A comprehensive approach.

Estimated time before clinical results: They estimate around 80% of patients experience significant improvement after 3-9 months.

Available Published Research: Clinical study with a UK university underway but no results yet published. Case Study available to read here.

Publications: Why ME? A book written by the founder Alex Howard available here.

Further info: Website available here

My 2 cents: This clinic is the open minded Generation X approach to recovering from CFS/ME. Many of the staff have healed themselves and I continue to learn from all the great information they put out. Alex’s personal journey and cheesy sense of humour is truly inspiring.

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Breakspear Hospital UK Protocol

Dr Jean Monroe

Overview – The breakspear hospital is a private hospital situated in the UK specialising in Allergies and Environmental Medicine.

Focuses primarily on: Cytokine shift.

Method: ‘Identyfing causes and searching for infectious agents through specialised laboratory testing and offering treatment’.

Estimated time before clinical results: Not Available.

Available Published Research: I could not find any but here is the anecdotal story of a well to do young lady in the UK who was really helped by their approach.

Further info: Website here. Treatment programme available here.

My 2 cents:  They appear to have a number of Doctors who really know their stuff and offer an allergy neutralisation therapy which has changed many peoples lives.

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Prof Rich Van Konyenburg Protocol

Rich Van Konyenburg

Overview – An independent researcher from the USA focusing on glutathione depletion as the central cause of CFS/ME.

Focuses primarily on: Blocks in the methylation cycle and glutathione depletion

Method: A specialised nutritional protocol primarily utilising antioxidants

Estimated time before clinical results: 6-9 months

Research, Publications & Further info: A link to the awesome site aboutcfsme.com where all the info on Rich Van K’s work can be found.

My 2 cents: I’m glad Rich has tPAYG Summary Flying Souls 2011-12hrown his intellectual weight behind the CFS/ME recovery bandwagon. He is smart and has put forward an interesting hypothesis which is being absorbed into many other peoples thinking. Glutathione appears to be the antioxidant on peoples lips all throughout the medical world.

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Dr Paul Cheney’s Protocol

Dr Paul Cheney

Overview – Dr. Paul Cheney is a physician based in the USA. He is a heavy weight in the field of CFS research and has been working in the field for over 25 years.

Focuses primarily on: Cardiac issues (2005) & Genes.

Method: ‘An individualized, multidimensional approach using many traditional elements along with a strong focus on cutting-edge attempts to shift gene expression. We also investigate shifting the corrupted genotype using stem cells.’

Estimated time before clinical results: I couldn’t find any information on this.

Available Published Research:  Available via paid subscription here. Has published over 35 peer reviewed articles.

Publications: See Cheney research website listed below

Further info: Cheney’s website. And a useful article outlining the Cheney approach (2009) available here.

My 2 cents: Love him or loathe him, this man warrants your respect. Dr Cheney is one of the worlds leading researchers on CFS/ME and has been at it since the get go. He is expensive, controversial and isn’t afraid of pushing the envelope.

 

Where to Next? Have you read the 7 steps to Recovery? Or the introduction to XMRV?

7 Responses to A Summary of Leading CFS/ME Protocols: Part 1 ~ Tool
  1. Reiki ~ Treatments | CFS/ME Recovery Path
    October 7, 2010 | 2:55 am

    […] to Next? Have you digested Part 1 of the Summary of leading CFS/ME Protocols? 0 Comments – Leave a comment! « Previous Post Next Post […]

  2. roclafamilia
    October 21, 2010 | 2:08 pm

    Helpful blog, bookmarked the website with hopes to read more!

  3. […] the world who would be worth mentioning except there is barely any information online. This blog post supplies a great run down of some of these specialists and their protocols. Blake Graham has […]

  4. Brian Collecott
    December 21, 2012 | 11:52 am

    Yes, the kind of journey we all have to take I guess. There though mass of information online. It’s a matter of separating it from hysteria, BS, and medical opportunism. My rule was to listen only to those who had CFS and recovered. My understanding so far is that most sufferers have a mitochondrial dysfunction which predisposes them to react with an energy deficit in the face of toxic trauma. True there may also be an element of immune dysfunction. Several studies including Richard Kronynenburg’s seem to indicate indicate that addressing either of these factors makes very little difference until toxicity is addressed. The major suspect in this case being the neurotoxin mercury, since medics have been cheerfully pumping this stuff into us for years with no regard or interst in the consequences. Where there is mercury there seems to be GI candidiasis and both need to be addressed, or at least eliminated as the major factor in exhaustion. I notice a HUGE reluctance to accept it as the major poison and notice a proliferation raised eyebrows from medics whenever mercury is mentioned implying that I’m merely deluded, and that is probably responsible for the continuance of a number of ‘unfathomable’ chronic disorders. (I am an ex-lab tech, and nurse) Added to that, it is truly a MAJOR ‘DRAIN BLOCKER’ in the detoxification process. When I treated for this I started to get very noticeable improvements over a number of months, unfortunately it’s expensive and not monitored in any way (my nutritionist retired last year) so quite dificult. Also medics are apt to prescribe for other disorders without any regard to the effects of their meds on CFS. When I pointed this out recently (at London St Thomas’ Hospital) I was told that my CFS protocol (chelation and diet)was ‘not real medicine anyway.’

    • Joe
      January 13, 2013 | 9:32 am

      Right on Brian. Great to here the mercury detox has been of benefit to you. Good luck getting back to full health.

  5. Quincy
    March 9, 2014 | 6:30 am

    Hello! Would you mind if I share your blog with my zynga group?
    There’s a lot of folks that I think would really appreciate your content.

    Please let me know. Many thanks

    • Joe
      May 1, 2014 | 10:05 am

      Sure, what’s a zynga group?

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About
Welcome! I'm Joe and my vision is to empower people with the knowledge they need to take control of their health. I was diagnosed with Chronic Fatigue Syndrome (CFS/ME) in 2003 and recently added Lyme disease to that diagnosis in 2012. I'm on a path to recovery and I invite you to join me..... P.S. It's best to never take anything I say too seriously. In fact I reckon it's best to never take anything too seriously!