The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Deep healing in M.E.: An order of attack

Deep healing in M.E.: An order of attack This paper examines in what order different treatments and management techniques are best implemented. Fill-in charts are provided throughout so that patients can use this paper to track their own progress.

Deep healing in M.E.: An order of attack

Copyright Jodi Bassett and co-authored by Bea Fawcett October 2012. From www.hfme.org   

This paper examines in what order all the different treatments and management techniques are best implemented.

 

Before starting any new treatment, please read the safety notes given on the Health, Healing & Hummingbirds website. This site discusses many vital ways to follow treatment programs safely and the importance of proper research and medical support. Please dont assume that all non-prescription treatments and substances cannot do you any harm. This is just not true, especially as many of these treatments can cause something called a healing reaction. Following this program without reading this paper first could make you very ill!

 

At a minimum this paper should be read together with the main Health, Healing & Hummingbirds papers as listed at the top of the mini-site map on the site. This reading can be spread out over many months.

Note that the fill-in chart segment of this paper is included only in the Word/PDF download of this paper. It is not included on the webpage due to formatting conflicts.

 

Stage one

a. Make sure of your M.E. diagnosis as much as you reasonably can. This is very important not because the program below is likely to harmful to those with other diseases, but because a misdiagnosis may mean you miss out on a treatment that is disease specific and perhaps curative or even life-saving, and because having a correct diagnosis of a disease other than M.E. almost certainly means better social and financial support and medical care.

Be aware that merely qualifying for a (mis)diagnosis of 'CFS' or 'ME/CFS' in no way means that you have M.E. See:The misdiagnosis of CFS,Testing for Myalgic Encephalomyelitis and Testing for M.E.: Plan D.

b. Treat the infection in the earliest stages if possible. If you were hit with acute onset M.E. very recently, please see the paper Treating M.E. in the early stages and go through the information there, first.

c. Strictly avoid overexertion. M.E. patients who are able to rest appropriately and avoid severe or repeated overexertion have repeatedly been shown to have the most positive long-term prognosis. The importance of avoiding physical, cognitive, orthostatic and sensory overexertion in M.E. just cannot be overstated. See:The importance of avoiding overexertion in M.E. and Assisting the M.E. patient in managing relapses and adrenaline surges

d. Educate yourself about M.E. as much as you can. Make sure you don't negatively affect your health by being taken in by any of the myths or misinformation surrounding M.E. Reading as much as you can about your disease will also help you to get the support you need from those around you. See: What is Myalgic Encephalomyelitis?

e. Find a knowledgeable doctor that can help advise you on treatment. For more information see: Finding a good doctor when you have M.E.

f. Take notes and document all your changes. Buy a notebook, and briefly note down any big changes you make that day or week to your diet or to supplementation and any worsening or improvements in your condition. Then you'll have some clues as to the cause of any problems that arise without having to rely on an unreliable memory. Notes can be very brief, and not written daily, and still be effective.

 

Stage two

a. Improve your diet and the health of your gut. No disease can be healed while the gut is functioning poorly. The gut houses half of the immune system and the detoxification systems and poor gut health means not absorbing the nutrients necessary for healing from food or supplements. Each change to the diet should be made over 1-2 weeks to avoid or at least minimise problems.

b. Reduce your toxic load. Change the types of personal care and cleaning products you use, don't smoke or drink alcohol, and buy a water filter. For more information see HHH.

c. Start getting some nutrients in. Slowly work up to taking a full daily-dose of a good quality multivitamin and mineral product over weeks or months depending on your sensitivity level. For more information and product links see HHH.

Once you're taking a half or full daily-dose of the multi, start to slowly work up to taking some extra vitamin C every day. Aim to take at least 5 - 10 grams daily orally in divided doses or 1 sachet of liposomal vitamin C daily, or both. (If you feel confident about raising the dose further there is no problem with going up to a bowel-tolerance dose now, or the liposomal vitamin C equivalent, but this is optional.) For more information see HHH.

d. Make sure you're having at least two bowel movements daily. Constipation places a toxic burden on the body and can even be fatal in extreme cases. If dietary changes and making sure water intake (2 litres daily, or more) is adequate isn't enough to ensure two bowel or more movements daily, a daily vitamin C or magnesium flush may be helpful. Coffee enemas can also be used for this purpose, if disability allows.

 

Stage three

a. Further improve your gut health, if necessary. Treat issues such as Candida and a 'leaky gut' if they exist and start taking small amounts of probiotics if you haven't already. Digestive enzymes may also be helpful. Tests can be used to determine the presence of Candida overgrowth and a 'leaky gut.'

b. Increase your levels of the basic nutrients. Increase the amounts of vitamins A, the B vitamins, vitamin E and the major minerals such as magnesium, potassium plus also calcium. Start working through the listing for each of these nutrients on HHH but at the lower or mid-range end of the dosages indicated, unless you feel able to go a little higher without problems. Depending on your sensitivities a quarter dose of each of these nutrients may be enough at this time.

c. Consider a daily or weekly coffee enema regime .Coffee enemas (or colonics) help lift the burden of the liver which is beneficial for healing and can immediately make you feel less ill and poisoned. Enemas are not for everyone. Some patients will be too ill to even attempt them and they should also be avoided if they cannot be done without causing a relapse of any kind.

d. Consider starting a daily niacin flush regime. Taking enough of the flushing form of niacin 3-4 times daily to flush each time is recommended by some doctors. This dilation of blood vessels helps get the nutrients you are taking to all the parts of the body and brain where they are needed. Dosage should begin at just 25 mg daily and be worked up very slowly. The final dose is likely to be between 25 mg and 300 mg. The flush should always be mild and last no longer than 10 minutes.

e. Consider starting some meditation and relaxation exercises. Often M.E. patients are too ill for such tasks but if health allows, consider starting a meditation program or perhaps a relaxation program. It is very important to be relaxed during and after eating so that the body has more resources available to digest the food and so an after-meals relaxation program may be a good idea.

f. Consider getting some sun exposure. You might also try and to get a little bit of sun exposure on your arms and legs a few times a week to boost your vitamin D levels, but only if this is possible without any kind of relapse. The darker your natural skin colour, the more sun exposure you will need. Vitamin D levels can also be tested at this time, if desired.

g. Investigate your thyroid and adrenal function and consider supportive treatments. Low thyroid and adrenal output are a core part of M.E. and are seen in nearly all patients. As with low thyroid output, the question of whether or not low adrenal output in M.E. should be boosted directly or treated more gently and indirectly via a more general deep healing program is a difficult one. Low adrenal and thyroid output may well be a protective mechanism, protecting our bodies from further harm. For more information on these important issues including the appropriate testing please read the appropriate section on HHH.

 

Stage four

a. Increase the vitamin C dose further. Start to slowly raise the amount of vitamin C taken every day. Aim to take at least 10 - 20 grams daily orally in divided doses or 2-3 sachets of liposomal vitamin C daily, or both. (If you feel confident about raising the dose further there is no problem with going up to a bowel-tolerance dose now, or the liposomal vitamin C equivalent, but this is optional.)

Starting to take a sachet of liposomal glutathione (GSH) daily (or weekly) at this time is also recommended, if budget allows.

b. Start taking a wider variety of nutrients. Start working through the listings for fish oil, CoQ10, L carnitine, vitamin D, B12 and lipoic acid on HHH but at the lower end of the dosages indicated, unless you feel able to go a little higher without problems. Depending on your sensitivities a quarter dose of each of these nutrients may be enough at this time.

c. Consider daily vegetable juicing. Fresh vegetable juice is very easy for the stomach to digest, allows you to stock up on valuable enzymes and other nutrients and aids in detoxification. 250 - 750 ml of vegetable juice daily can be consumed with a meal or between meals.

 

Stage five

a. Consider the Klenner protocol for neurological disease. Dr Klenner's B vitamin protocol for M.S. and other neurological diseases has been used for over 40 years. It aims at healing and reversing existing neurological and other damage and the damage to myelin sheaths. Advocates claim that it is potentially curative, depending on the severity of the condition prior to treatment. The protocol involves daily B1 injections and moderate to high amounts of B vitamins and other nutrients taken orally. The length of the program depends on the length of time a person has been ill. For patients ill for many years it may take 5 years or more for the full results to be seen, and a lower-dose maintenance program is required for life. Read as much as you can on this protocol and then make up your own mind. See HHH.

 

Stage six

a. Get your vitamin D level tested. This simple test will indicate whether or not you need to get extra sun exposure or take extra vitamin D3, for optimal health. You may also consider having a test of your iodine levels done and taking extra supplemental iodine if necessary. The iodine test needs to be ordered and interpreted by a doctor, but a reputable and reliable vitamin D test can be bought online without assistance from a doctor or can be done by your doctor.

b. Increase the vitamin C dose to maximum. If budget allows, aim for a daily bowel-tolerance oral dose of vitamin C or the liposomal vitamin C equivalent, or a combination of the two. This will need to be taken in at least 6 divided doses.

c. Increase the dosages of the nutrients you're taking, if necessary.

d. Consider having a hair elements test done. This test can indicate whether or not certain trace mineral levels are very low and need to be supplemented in small doses.

 

Stage seven

a. Consider starting an FIR sauna program for detoxification. Wooden FIR saunas cost over $1000 but cheaper units can be bought for around $200 and used as is, or converted to be used lying down. NIR saunas can also be built or bought for around $300 - $500, and can be adjusted for use by the bedbound. Sauna programs should not be attempted until you feel you have some extra strength to spare as sauna use causes healing reactions and requires that you have extra rest. Very ill patients can start at just 10 minutes once a week or fortnight and work up only very slowly, to make sure that healing symptoms remain mild. FIR sauna programs will usually last 1-2 years for serious diseases like M.E. with the goal being to work up to an hour or so of use daily, if possible. It is important to correct nutritional deficiencies before starting a sauna program, to boost vitamin C, ALA and glutathione levels during sauna therapy to support phase II detoxification and also to replace the water and minerals that are lost during sauna use, as you go.

b. Consider regular coffee enemas and a one-off gallbladder flush. Liver support is very important during an FIR sauna detoxification program.

 

Stage eight

a. Make constant adjustments to your program as needed. Your dietary needs may change over time, tests such as the vitamin D and iodine tests need to be retaken periodically, larger doses of some nutrients needed at the start of therapy may no longer be needed several years later, you may be at the end of an intensive FIR sauna program and be able to switch to a lower maintenance level, and so on. You need to constantly make decisions on how to adjust all the things you are doing over time, based on medical advice, research and the response of your own body to the changes you make.

 

Suggestions on ways to use this paper

  • If desired this paper can be used as a personal progress chart. You can mark a circle or tick beside each stage you have completed and fill out the tables included with some of the sections in order to more easily chart your own progress. (This may be for your own benefit or to help make it clearer to friends and family and carers why you're doing what you are doing and how they can help you with it.) It is recommended that this paper be printed out and kept handy in a display book or on the wall or similar if used for this purpose.

  • If you don't want to use this as a form to fill out, you may like to delete all the tables included in the document before you print, to save on paper.

 

Notes on this text

  • Why is vitamin C emphasised so much and so early? Vitamin C in pharmacologic doses improves immunity (meaning you'll get fewer colds and flu), boosts the immune system, improves your sensitivity to chemicals, lessens allergic reactions or intolerances to foods, supports your adrenals, helps you cope with stress, and is a powerful antioxidant and anti-inflammatory substance. It also has a powerful anti-viral effect (if taken by IV or liposomal delivery system). It helps all the body's organs and systems work better, is a very important part of deep healing but makes you feel brighter, less 'poisoned' and more well generally in the short term. Vitamin C is incredibly important and beneficial. The only problem is that taking too much too fast can make you feel awful. But if one raises the dose very slowly healing reactions caused by raising the dose of vitamin C can be very much minimised or even eliminated.

  • Why aren't I feeling the vitamin C benefits much? A lack of obvious benefits from vitamin C may be seen in severe disease even at a dose of 10 - 20 grams daily or more. The more severe the disease generally, the higher a dose is needed. A lack of improvements indicates that a higher dose is necessary. It may take 10 - 20 g daily for even the mildest benefits of vitamin C to be seen in M.E., this is quite likely. 

  • How long does it take to see improvements? It takes as long as it takes unfortunately. Progress varies depending on biochemical individuality, what doses you're taking and which nutrients you're taking, how long you were ill before treatment began, how much damage you did to your body before treatment began, how well rested or stressed you are, your individual toxic load and daily chemical exposures, how healthy your gut is, your age and sex, and so many other factors. It also depends on how long it has taken you to work through the different stages.

  • Do the different parts of each stage need to be done in order? Not necessarily. Some items have been grouped together because they can be overlapped to some extent or even done concurrently while others are in the same section because they are linked in a particular order. Use your own judgement to work out when doing things in order is and isn't appropriate.

  • How long should it take to work through all these stages? Probably many months or even a year or more. How long it takes depends on easily you can take supplements and make dietary changes without relapse. Some patients can take a full-dose of a multivitamin within a few days with few problems while for others this may take a long time and many different brand products may have to be tried. Again, it takes as long as it takes. After a while you should have a good idea of how sensitive to supplements you are and how fast or slow you should introduce new things.

  • What are the general principles used to construct this list?

o Spending a lot of time and money investigating supplements and detoxification regimes will likely not get you anywhere fast if serious overexertion is continuing (physical, cognitive, orthostatic or sensory), toxin exposure is high, constipation is occurring and the diet is poor.

o It is important to heal the gut as much as possible before embarking on a dedicated supplement/treatment program. Poor gut function will prevent healing and also prevent supplements and the nutrients from food from being absorbed properly.

o It is better to take small amounts of all the necessary basic vitamins and minerals etc. rather than very large amounts of one or two things (or exotic herbs or other supplements that the body does not actually need to function).

o Increasing the doses of supplements gradually is important and it reduces the likelihood of problems. The body likes gradual change.

o It is important to make sure that you have treated any serious vitamin and mineral deficiencies before embarking on a dedicated detoxification program (or taking large amounts of nutrients involved in detoxification, such as magnesium). It is also important that the patient feel up to being made a bit worse for a period of time, before starting a detoxification regime.

o It is important to understand that many essential treatments can make the patient feel worse at first and that this is not always a sign that the treatment should be discontinued. A 'healing reaction' can sometimes be a very good sign. For more information see:Symptom-based management vs. deep healing in M.E. and Recognising and managing healing reactions in M.E.

o It is just as important to avoid the inappropriate and unhealthy treatments and foods as it is to try useful treatments and eat nutrient-rich food. Knowledge is power.

o Various tests can be used to find out what is happening in the body and to determine the most appropriate treatments in M.E. This includes tests for Candida, the 'leaky gut' test, food allergy testing, gluten sensitivity testing, iodine testing, vitamin D testing, detoxification profile testing and so on. Your trained orthomolecular/holistic/environmental medicine expert will be able to advise you on which tests are necessary for you and when. For more information see: Additional health testing and M.E.

o A program such as this one requires the patient to take responsibility for their own health and to be adequately research and document all new treatments.

  • In addition to this program other treatments, tests and symptomatic treatments may be necessary depending on your individual health issues. Please visit the Health, Healing & Hummingbirds website for more information on all aspects of treatment.

 

Disclaimer: HFME does not dispense medical advice or recommend treatment, and assumes no responsibility for treatments undertaken by visitors to the site. It is a resource providing information for education, research and advocacy only. In no way does reading this site replace the need for an evaluation of your entire health history from a physician. Please consult your own health-care provider regarding any medical issues relating to the diagnosis or treatment of any medical condition.

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Exciting book news!

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95