Health, Healing & Hummingbirds

Scientific information on improving serious disease through nutrition and treating the causes of disease
 – summarised from 100 of the world’s most cutting-edge health books

Treatments for particular M.E. symptoms

1. Testing for and treating low thyroid and adrenal output

2. Changed immunity to cold and flu bugs (and other infections) in M.E. over time

3. The importance of daily bowel movements and treating constipation in M.E.

4. Treating the mitochondrial dysfunction of M.E.

5. Resetting circadian rhythms and the reversed sleep/wake cycle seen in M.E.

6. Improving sleep

7. Treating chronic pain

8. Treating the low level seizures and ‘sensory storms’ seen in M.E. (plus, the benefits of medicinal marijuana for seizures and pain in M.E.)

9. Dealing with noise sensitivity

10. Treatments for improving a ‘leaky’ gut

11. Lowering homocysteine levels

12. Improving blood sugar control and hypoglycaemia

13. Improving breathing problems and breathlessness

14. Improving dry eyes

15. Improving peripheral neuropathy

16. Improving vertigo

17. Treating hair loss

18. Dental health and M.E.

19. Improving cognitive abilities in M.E.

20. Safely treating high blood pressure when you have M.E.

21. Reducing the risk of blood clots in M.E.

22. Improving liver function in M.E.

23. Additional useful therapies and products for M.E.

24. Miscellaneous other potentially useful treatments

25. What is the prognosis for M.E.?

26. ‘Dual diagnoses’ and M.E.

27. Can I or should I still donate blood if I have M.E.?

28. Am I at a greater risk of contracting cancer because I have M.E.?

29. I’m overwhelmed trying to work out which supplement brands to buy, can you help?

30. I’m having one of those days where I just don’t want to take any more supplements, what should I do?

31. Notes on applying for the appropriate/necessary benefits/welfare/disability support

 

To read about why focusing primarily on symptomatic treatments is not the best way to go, see the thought provoking article: DEEP HEALING VERSUS SYMPTOM REMOVAL by Lawrence Wilson MD or the HHH articles listed at the top left of the HHH site.

 

 

1. Testing for and treating low thyroid and adrenal output in M.E.

For information on thyroid and adrenal issues, please see the Adrenal and thyroid issues and M.E. paper.

 

 

2. Changed immunity to cold and flu bugs (and other infections) in M.E. over time

Right after the onset of M.E. the patient seems to get every single bug going around. A little bit later on, in the acute/severest stages of M.E. (which often persists for a number of years or perhaps decades) patients often find that their immune system is so hyper-responsive that they do not get any cold or flu bugs at all during this time. Finally starting to get these infections again in M.E. is acknowledged to be a sign that the illness is improving overall. It’s a very, very positive sign.

 

For information on preventing and treating colds and flu and why flu drugs and vaccinations are not a good idea, please see the HHH colds and flu paper.

 

 

3. The importance of daily bowel movements and treating constipation in M.E.

It is extremely important for M.E. patients to have at least 2 bowel movements daily. The longer the transit time between food being eaten and the wastes being expelled, the more chance there is for the food to ferment and for the toxic load of the liver to be increased. This can make you feel very ill and cause a number of other serious problems.

 

For many patients, finding the diet that is right for you and which avoids your food intolerances and allergies, treating Candida and Leaky Gut Syndrome will help to normalise bowel movements. But when this isn’t effective, it may be necessary to do a daily vitamin C or magnesium flush to get your two daily bowel movements.

 

According to Dr Sherry Rogers, to do a vitamin C flush, take ½ to 1 teaspoon of vitamin C power in water every hour, until you have a bowel movement. Then, cut back your daily dose to the point where you have 2 normal bowel movements daily.

 

To do a magnesium flush, take ½ to 1 teaspoon of magnesium oil in water each day and very slowly increase your dosage until you have a bowel movement. Then, cut back your daily dose to the point where you have 2 normal bowel movements daily. Too much magnesium can cause heart problems and so the vitamin C flush should probably be the first choice here.

 

To speed up transit time and improve liver health even further, whether suffering from constipation or not, it may also be a good idea to look into coffee enemas for detoxification. For more information on this therapy see the ‘Enemas for detoxification in M.E.’ paper. Poor thyroid function can also be a cause of constipation.

 

 

4. Treating the mitochondrial dysfunction of M.E.

A large body of research spanning many decades has unequivocally implicated mitochondrial dysfunction as an essential/core feature of M.E. Mitochondrial problems, or the cardiac insufficiency it causes, are the cause of most M.E. symptoms. Mitochondrial (or krebs cycle) supports are a useful treatment for M.E. (including some of the cardiac and cognitive problems of M.E.).

 

Dosages given here are for adults, and are only a rough guide. (Note that while some patients may experience some benefit at lower doses, some of us need high doses of some of the mitochondrial supports to really get the full effect. This applies most of all to CoQ10 and Carnitine; some of us do best on 2 -3 g of Carnitine and find we need 300-400 mg of ubiquinol CoQ10.) To learn more about the mitochondrial defects in M.E. (including more information on dosages) see: United Mitochondrial Disease Foundation (see the treatments page) and the Dr Cheney page. To see some of the abundance of M.E. mitochondrial research available see Mitochondrial Muscle Research. (Note that some doctors prefer to prescribe injections of magnesium rather than oral supplements; see the section below for a warning about the administration of very high doses of oral or injectable magnesium.)

 

Coenzyme-A (CoA) is the most active metabolic enzyme in the body - that triggers so many metabolic processes. CoA is the vital catalyst needed to utilise Co-Q10, NADH and other energy producing metabolic enzymes. CoA is also a potent natural detoxifier, can aid in treating Candida infections, and allows the adrenals to produce more cortisol. CoA levels are raised by taking precursors such as pantethine.

 


5. Resetting circadian rhythms and the reversed sleep/wake cycle seen in M.E.

The reversed sleep/wake cycle common in M.E. may be treated with nightly melatonin. Dosages usually range from 300 mcg, to 3 mg. Start at a low dose and work up slowly only if you need to.


Evidence indicates methylcobalamin B12 has some metabolic and therapeutic applications not shared by the other forms of vitamin B12. MB12 has also been shown to help reset the sleep/wake cycle. Methylcobalamin sublinguals may be necessary to reset the sleep/wake cycle, along with melatonin.


Light exposure in the morning can also be helpful although very few M.E. patients will be able to tolerate this, unfortunately, due to photophobia and seizure issues.

 

Additional notes: ‘Benzo’ drugs may reduce melatonin and NSAIDS suppress melatonin. B12 deficiencies have been shown to suppress melatonin production. Deficiencies of magnesium, B1 and B6 may also reduce melatonin levels since these nutrients are essential in activating the enzymes that facilitate production of serotonin and melatonin. A warm bath before bed raises melatonin slightly. This information is taken from the references listed in the main vitamin B paper. Dr Dowsett’s Special Feature on sleep problems may also be useful to read.

 

 

6. Improving sleep

Vitamin B12, magnesium and CoQ10 (ubiquinol) can have a remarkable and very positive effect on sleep initiation and quality. Ashwagandha, L-tryptophan and inositol (at a dose of 1 – 2 g) can also greatly improve sleep and let you go to sleep more easily. Niacin taken at night can also improve sleep.

 

 

7. Treating chronic pain

Pain can be minimised by making sure your vitamin D levels are optimal, avoiding overexertion, avoiding foods from the nightshade family (and all other foods you react to, or that are inflammatory) and by taking 20 grams or more of vitamin C per day plus adequate magnesium. Other substances that may be helpful include curcumin, medicinal marijuana, fish oil and Octacosanol. Stretching, heat packs and massage may also be helpful. It is also important to make sure you have a good quality bed that provides the proper support.

 

It is important to try these very safe options and to try to treat the possible cause of the pain with these vitaminins and supplements before moving on to medications with serious side-effects. If serious pain still persists, however, opiate-based pain medication may be something you need to look into.

 

 

8. Treating the low level seizures and ‘sensory storms’ seen in M.E.

Seizures are a big problem in M.E. Many patients will suffer absence seizures (petit mal seizures), myoclonic seizures (or jerks) and other types of conscious seizures or ‘sensory storms’ due to noise and light exposure and mental overstimulation and so on. The first part of treating these seizures is avoiding overstimulation and overexertion as much as possible. Secondly, improving seizures involves improving/treating the M.E. itself, so things like mitochondrial supports, vitamin C and B12 and so on, all those supplements which can improve function generally, will also help reduce seizures.

 

It is said that sometimes one can stop a seizure from happening if you can withdraw from stimulation and get the brain into a meditative state very quickly as soon as you start to feel it coming on, as seizures don't happen during alpha brain wave states which occur during meditation. Seizures occur during theta or beta brain wave states only. It is hard to know how practical this advice is for those with M.E. who may have great difficulty meditating but it may at least be worth a try. (This may only work where there is an obvious trigger such as excessive television or light exposure etc. They also say to avoid neurotoxins in food, in pesticides and cleaning products etc. and that the drug Wellbutrin should also be avoided by those suffering seizures. Nutritional supplements which may be helpful in reducing seizures include magnesium, taurine, vitamin B6,  manganese and zinc and possibly also small doses of GABA.)

 

Diet is also very important, foods containing MSG for example excite the neurons and increase neurological overstimulation. So avoiding MSG and aspartame is very important, as well as the aforementioned pesticides etc. Sage should also be avoided, along with DMAE. Some M.E. patients recommend the drug Neurontin as being very helpful in reducing seizures and neurological overstimulation generally. Please see the warning on this drug below, however, before use. Another drug which may be useful in reducing seizures is Piracetam, see below for details. (Piracetam is a derivative of the amino acid GABA.) Neither of these drugs is recommended by HHH.


Some patients with M.E. will experience grand mal seizures. If this occurs, please see a neurologist if at all possible. General treatments for grand mal seizures may be needed, but make sure to start at very doses to make sure the drug will be well tolerated.

 

 

The benefits of medicinal marijuana for seizures and pain in M.E.

A controversial treatment for reducing seizures and "excitatory neurotoxicity," and one not widely available (unless you are in California, Canada or Holland etc.) is medicinal marijuana. This drug has many side effects however (it may trigger mental illness in susceptible individuals and may interfere with memory in the short-term), so extensive research and weighing of the risks and benefits is recommended before use. This drug should only be used by adults, as it may cause long-term problems with memory and learning in the growing brain which do not occur in adult brains.

 

Medicinal marijuana may be useful for: pain relief, relief from nausea, increased appetite, sleep initiation, as a general relaxant and muscle relaxant, reduction or cessation of tremors and repetitive shaking, it may help remove neurological ‘blocks’ to starting or continuing activities, and may help balance the immune system (and reduce hyper-active immune responses). If possible, vaporizing the drug is healthier than smoking it. The drug may also be eaten in food, but as dosage cannot be precisely controlled and the effects last 12 hours or more this will likely be undesirable. Medicinal marijuana is often used effectively in cancer, HIV/AIDS and also other neurological and muscular diseases such as Multiple Sclerosis. For more information on risks, benefits and legal issues you may wish to view the excellent 2009 BBC documentary ‘Cannabis: The evil weed?’ on YouTube.

 

 

9. Dealing with noise sensitivity

This can be one of the very worst symptoms of M.E. The pain can be indescribable. To some extent this problem is part of the seizure disorder seen in M.E. (and neurological overstimulation), but it also involves mitochondrial dysfunction, and so the suggestions for treating seizures and mitochondrial dysfunction in M.E. are also appropriate here. It is also true to say that probably the best way to improve symptoms of noise sensitivity is to improve M.E. generally. (Magnesium is also very important as a symptom of low magnesium levels is sensitivity to noise.)

 

It would be so wonderful if everyone with M.E. could have access to a fully sound-proof (and very dark) room (and a decent doctor and proper medical care, but that is another issue!).

 

Other things which may help with this terrible symptom include:

1. Background noise from a heater or fan, or very softly playing classical or new-age music

2. Noise cancelling headphones (or earplugs)

3. A no- or low-sugar diet can help reduce symptoms of noise sensitivity

4. Double glazed windows, and extra thick solid wood doors with rubber seals along the edges (so that when the doors are closed the room is almost airtight) are very expensive but can help recuce the amount of noise that enters a room remarkably. (This may only be an option where a new house is being built. It may also be worth talking to acoustic experts to see if any other noise blocking materials can be used in building. Insulating the walls and roof may also be helpful in reducing noise.)

5. If a new house is being built, designing it so that the patient’s roomt has no walls which are external will help cut down noise from the outside world to a large extent.

6. If noise from neighbours or the road is too much, putting objects in the way can help. This includes trees, bushes, and rainwater tanks etc.

6. If noise from the outside world is very bad, having a bath may help as the exhaust fan may block some of the noise. The bathroom may also perhaps not have any walls which are external and so be a much quieter room, and the warmth of the bath itself may be soothing.

7. Ducted air-conditioning usually requires that a door be left open to allow proper air flow, but this can let in noise horribly. Vents can be fitted to the roof however, which allow air flow without an open door or window.

8. Where noise is extreme and will persist for days or longer, it may be advisable to try and secure accommodation with a friend or family member, or paid accommodation, for this time period. (Even where the person is housebound, the relapse from the travel may be less than  the relapse from the noise. This is of course a difficult and horrible choice to have to make, as it is always lose-lose.)

 

 

10. Treatments for improving a ‘leaky’ gut

See the pages on HHH about diet for information on leaky gut treatment.

 

 

11. Lowering homocysteine levels

All chronic disease cause high homocysteine levels and this is documented in M.E. specifically also. High homocysteine levels can be lowered with (a combination of) products which improve the process of methylation such as: sublingual (or injectable) vitamin B12 as methylcobalamin, Betaine (TMG),  vitamin B6, and methyl folate. TMG can cause severe relapse, or may not be tolerated at all so go very slowly or skip this one and just take the B12, B6 and Folate.

 

 

12. Improving blood sugar control and hypoglycaemia

See the pages on HHH about diet for information on hypoglycaemia treatment.

 

 

13. Improving breathing problems and breathlessness

Muscle problems, particularly those affecting the muscles around the lungs and restricting breathing may need treatment with a muscle relaxant drug such as Baclofen.

 

 

14. Improving dry eyes

Dry eyes may be improved by taking GLA capsules, vitamin C and vitamin B6, as these supplements can help increase tear production. Potassium, phosphidatyl choline, ALC and zinc may also be helpful along with hyaluronic acid supplements.

 

Dr Sherry Rogers writes that the most common cause of dry eyes is low omega 3 oils in comparison to omega 6 oils. She recommends testing to determine your fatty acid ratios if possible, or taking larger doses of cod liver oil for a few months to try and fix the problem. She recommends treating and fixing this problem rather than just treating the symptom with eye drops, as dry eyes are indicative of bigger problems happening internally.

 

Dry and itchy eyes can also be caused by airborne allergens.

 

Some patients like to make their own ‘artificial tears’ spray by adding water and salt (enough so that it tastes about as salty as normal tears) to a sterilised spray bottle and spraying a mist into the eyes as needed. This bottle should be emptied and redone at least once a week to avoid infections.

 

 

15. Improving peripheral neuropathy

Peripheral neuropathy can be treated with folate given IM, or large doses of vitamin B1 given orally or by IM or IV or vitamin B12 given sublingually or by IM or IV. B12 deficiency is a common cause of numbness and tingling and should always be investigated if these symptoms occur.

 

 

16. Improving vertigo

The most important supplements to improve vertigo are ginkgo, magnesium, ginger, piracetam and vinpocetine. Recommended nutrients also include vitamin B complex, vitamin B3 as niacin, vitamin B6, vitamin C, vitamin E, choline, and adrenal supports. A low sugar diet may also help improve symptoms of vertigo.

 

 

17. Treating hair loss

One of the main causes of hair loss is thyroid problems, and this is followed by other hormonal problems. Treating these issues may reduce, or even stop, hair loss in M.E.

 

Hair loss can also be caused by low levels of vitamin C. Other nutrinets linked to hair loss are vitamin A, the B vitamins, vitamin D, E, and K, calcium, magnesium, iron, iodine, selenium and zinc.

 

A silicon supplement called ‘Biosil’ can greatly improve hair health and hair thickness and nail health (although this will probably not treat the cause of the hair loss). Biotin (vitamin B7) is also said to be able to improve hair and nail quality. Hair loss can be caused by many serious diseases, including M.E. Therefore, the best way to treat hair loss may be to treat and improve the underlying disease itself.

 

 

18. Dental health and M.E.

For more information on healthy dentistry check out the page on nutrition and dental health listed on the site's homepage.

 

 

19. Improving cognitive abilities in M.E.

The best way to improve cognitive abilities in M.E. is to follow the diet and supplementation recommendations made on HHH, and to also follow the section on sleep.

 

 

20. Safely treating high blood pressure when you have M.E.

Treatments for high blood pressure (or which work to normalise blood pressure) include ubiquinol (CoQ10), garlic supplements, hawthorn extract, fish oil, and folate. Supplementing with calcium magnesium and potassium can also be helpful. Eating 4 stalks of celery daily can help lower high blood pressure due to its luteolin content (luteolin, or tetra-hydroxyflavone, has the potential of healing or repairing the peroxisomes).

 

Some of these treatments have been tested specifically in relation to improving high blood pressure with favourable results. Google these terms for more information on soem of these studies.

 

Note that M.E. is very strongly associated with very LOW blood pressure and high blood pressure is uncommon in M.E. Drugs which treat high blood pressure may have serious unintended consequences in M.E. and may be counter-productive and detrimental to overall health.

 

 

21. Reducing the risk of blood clots in M.E.

Due to the fact that inactivity and circulation problems are major risk factors for blood clots, M.E. patients may be at an increased risk of this serious and life-threatening problem. Other risk factors include weight gain, diabetes, taking HRT or the pill, an elevated homocysteine level and cigarette smoking.

 

Magnesium and garlic have been shown to be as effective as aspirin at reducing the risk of blood clots. Also associated with reducing blood clot risk are CoQ10, vitamin E and fish oil. There is also ginkgo (60 – 120 mg), curcumin, ginger and bromelain.

 

Another natural alternative to daily mini-aspirin, which is problematic and not at all recommended, is Nattokinase (according to Dr Cheney) and Silymarin (according to Dr Sherry Rogers). Aspirin taken daily can double your risk of having a stroke and also lead to increased intestinal permeability.

 

Also note that pregnancy is an additional risk factor for forming blood clots in the legs and pelvis. Talk to your doctor about safely reducing the risk of blood clots while pregnant as some supplements should not be taken during pregnancy.

 

(Please note that garlic, ginkgo and high levels of vitamin E, taken together increase the risk of bleeding problems. Ginkgo should not be taken with aspirin.  If you are taking prescription blood thinners check with your doctor before taking any of the supplements listed here.)

 

 

22. Improving liver function in M.E.

St Mary’s Thistle, or Silymarin, is an important antioxidant that helps support liver function in M.E. Dosage is usually 100 – 300 mg or more. Start at a low dose and work up slowly. Expect to wait 8 – 12 weeks to see results. Also note that many individuals cannot tolerate Silymarin even at low doses. It can make you very unwell.

 

Dr Sinatra’s website explains, ‘Artichokes, dandelion, root vegetables (carrots, beets), sulfur-containing foods (eggs, garlic, and onions), water-soluble fibers (pears, oat bran, apples, and beans), and cabbage family vegetables (broccoli, Brussels sprouts, and cabbage) all optimize healthy liver and gut function. You can also juice many of the abovementioned fruits and veggies, which also aids in the detoxification process by providing live enzymes.’

 

Eating freshly cooked liver, having liver injections, or eating powdered organic beef liver also helps boost liver function.

 

Treatments which can greatly boost liver function are coffee enemas and FIR sauna therapy. Dry skin brushing can also be helpful.

 

 

23. Additional useful therapies and products for M.E.

Products:

  • Very important for reducing the work-load of the heart are leg raising cushions – these can and should be used day and night in the severely affected especially.
  • To a lesser extent, medical quality (and carefully measured for correct fit) knee high or thigh high compression stockings may also be helpful, particularly for those who spend a significant amount of time out of bed, or are extremely severely ill. Waist high stocking may be eben more help, if also more uncomfortable.
  • Hot packs to treat neck and back pain.
  • Ice packs to treat the unique head pain experienced by M.E. patients at the base of the skull, and other headaches
  • Neti pots are a cheap and easy way to flush out and clean your nasal passages; just add salt and water. Very good for clearing out a blocked-up nose, caused by allergies. (Steroid nasal sprays may still be necessary in some cases however, along with extra vitamin C.)
  • Moisturiser and exfoliating gloves (or creams) can help keep your skin from drying out, and prevent too much hard dry skin building up. (When people are very inactive, the natural exfoliation processes do not occur in the same way, so manual exfoliation may be necessary.) Look for products made with natural oils and free of parabens etc.
  • A body brushing brush with natural bristles can be used to improve the circulation.
  • Clay face masks and clay or salt baths for detoxification.
  • Vitamin e oil may be useful to treat rashes and other skin conditions, along with vitamin C applied topically.
  • Having good back support in the recliners or beds where the day is spent is very important. Old saggy beds can cause back and pain problems that may be mistaken as M.E. symptoms.

 

Other types of treatments/therapies/programs:

  • Professional massage to relieve stiffness and pain. You can also massage your neck, hands and feet yourself.
  • Lymphatic drainage massage.
  • Chiropractic care form a trained professional (if needed).
  • Acupuncture (not useful to treat M.E., and attempts at this will often cause relapse, but may in some cases be useful if used to treat pain. Watch out for being left still for a long time once the needles are in, as this can be very painful and muscles may become very stiff and painful).
  • Applied Kinesiological Testing is a type of muscle testing involving biofeedback which is practiced by some health professionals to help determine the best treatment options for a patient. For more information see: Many Uses of Muscle Testing and What is Kinesiology & Muscle Testing?
  • Good dental care every day is very important and so is the care of a good quality holistic dentist, at times.

 

 

24. Miscellaneous other potentially useful treatments

Octacosanol. Octacosanol (C28H58O) is a 28 carbon long-chain saturated primary alcohol, and is the active ingredient in wheat germ oil. It is found in wheat germ oil, sugar can and spinach. Octacosanol may improve function in M.E. as it can increase the body's ability to use oxygen during exercise. As a variety of studies confirm, octacosanol can boost muscular strength (including that of the heart). Many of the minor tonic actions and cardiovascular benefits attributed to octacosanol may have to do with its ability to affect fat metabolism, blood platelet stickiness, and cholesterol production. The long chain fatty alcohol is thought to repair and stabilize destroyed portions of myelin sheath and promote neuron regeneration, and is used in many different muscular and neurological diseases (MS, ALS, cerebral palsy etc.). In short, Octacosanol is very beneficial for improving heart function, reduces pain and is a valuable nutrient for the CNS.

 

Spinach or wheat derived Octacosanol supplements are available, and synthetic versions should be avoided. Dosages of octacosanol range from 1 - 40 milligrams daily, depending on the severity of the medical problem. A minimum effective dose may be 6 - 8 mg, although doses of 15 – 30 mg may be more appropriate in MS and so also M.E. There appears to be no toxic effects at these dosage levels. Octacosanol is very safe, however as it thins the blood it should not be taken with blood-thinning drugs (or the Parkinson’s drug levodopa).

 

Low-dose naltrexone strengthens the immune system and may improve cognitive function. Many wild claims are made about it, but it is a treatment that I no longer support as the effect is symptomatic only and seems only very mild at best. For those interested however, dosage is 3 - 4.5 mg taken before bed. Toxicity is not a concern with LDN. Well tolerated by most M.E. patients if the dose is raised very slowly, although some minor symptoms/side-effects such as headaches may occur in the first few weeks. Requires a doctor’s script. Note that this drug should never be taken in combination with any drugs which are opiates (eg. codeine, Tramal/Tramadol etc.)

 

Inosine. Inosine is an anti-viral that enhances NK function. Dr Cheney says about Inosine in the article Balance the Immune System (Th1/Th2) and Basic Protocol/Treatment Plan: ‘It appears to raise IL-12 and lower IL-10, which turns off Th2 and turns on Th1. It is also called Imunovir and is very nontoxic, very safe. Week one, take 6 tablets a day, Monday through Friday, and none on the weekend. Week two, take 2 tablets a day, Monday through Friday, and none on the weekend. Repeat this cycle. But do not treat every month. Do two months on and then one month off of this "pulsing" dose.’ This supplement will often be poorly tolerated by M.E. patients and i not recommended.

 

Matrine. The Chinese medicine called Matrine may be useful, according to Dr Chia. He recommends the product Equilibriant. Equilibriant contains vitamins A and D, calcium and selenium, as well as extracts of olive leaf, shitake mushroom, shrubby sophora root, astragalus root and licorice root. (However, bizarrely, a caution is given about this not being appropriate for those with autoimmune components to their disease, which absolutely includes M.E. One wonders therefore if what is being discussed is merely a subgroup of ‘CFS’ and not in fact, M.E.? It is impossible to say, sadly.)

 

Matrine and oxymatrine are the two major alkaloid components found in sophora roots. They are obtained primarily from Sophora japonica (kushen), but also from Sophora subprostrata (shandougen), and from the above ground portion of Sophora alopecuroides. Matrine may be a useful treatment for coxsackie infection.  Click here, here or here for more information on Matrine.


Cramp bark. Cramp Bark can help relieve muscle spasms and menstrual cramps.

 

 

25. What is the prognosis for M.E.?

Myalgic Encephalomyelitis has many different and unpredictable outcomes. The illness can generally be; progressive or degenerative, chronic (and relatively stable), or relapsing and remitting. In some cases M.E. may also be fatal.

 

Unfortunately the myth that ‘everyone recovers eventually’ is just not true for M.E. patients, but many patients are lucky enough to experience some level of improvement over time, and so there is reason for hope.  (Everyone will probably recover eventually from various post-viral fatigue syndromes, but M.E. is an entirely different and unrelated disease to PVF syndromes with different symptoms, onset, pathology and prognosis.)

 

Full spontaneous recoveries, where the person is restored to normal functioning are thought to occur in up to 6% of patients (although experts warn that these are remissions rather than true recoveries and that relapse is unfortunately a future possibility for these patients). A significant number of patients will experience partial spontaneous remissions; where functioning improves markedly but there is still a mild to moderate level of disability present. (‘Spontaneous’ means that these improvements were natural, and not the result of treatment.) Around 25 - 30% or more of cases are progressive, degenerative or extremely severe. (The best way to look at this is that most cases are NOT progressive, degenerative or extremely severe…and even if you are severely affected, improvement IS possible for you in the future; particularly if you can strictly avoid overexertion. Dr Dowsett says that stabilization is possible at any stage of the disease so long as there is appropriate rest and treatment).

 

For what it is worth, every single person I’ve spoken to about it, that has been lucky enough to have recovered 70% or more of their pre-illness function was diagnosed early, treated appropriately and able to rest adequately in the early stages of the illness. With the right care and rest, M.E. does not have to be progressive, and significant recovery can happen and does happen. Even if you didn’t get the rest you needed in the early stages, rest and proper care in later stages, consistently, can still let you recover to some degree. It may not be 70%, but even 30% or 40% ability levels are nothing to sneeze at when you have been so severely ill.

 

The most severely affected sufferers too are almost always those who were the most active (either through ignorance or by force) in the earliest stages of their illness, and thereafter (myself included). Avoiding overexertion is almost EVERYTHING when you are looking at getting your best possible prognosis with M.E. This can’t be stressed enough.

 

The fact that we are limited in how active we can be with M.E., is a protective mechanism that stops us from causing further – and even more permanent and severe – bodily damage. M.E. is NOT FATIGUE and should never be treated medically in the same way as ‘fatigue.’

 

If you are able to, it is a good idea to monitor and keep records of your symptoms and the severity of your illness over time. Remember that it is not safe to assume that all new symptoms will be M.E. as unfortunately having M.E. does not make you immune from developing other illnesses.

 

 

26. ‘Dual diagnoses’ and M.E.

Despite the fact that severe pain is a well known and very common symptom of M.E. many M.E. sufferers who have pain are told that they now also supposedly have ‘Fibromyalgia.' But if pain is a recognised symptom of M.E. then how does an additional Fibromyalgia diagnosis made purely on the presence of pain make sense? Patients who have Fibromyalgia and patients with primary M.E. can be easily distinguished from each other with various tests (and other means), so what do tests show in patients who supposedly have both?


Interestingly, when patients have both illnesses the test results given are the ones for M.E. only. So do these M.E. patients really also have Fibromyalgia, or do they just have severe pain as part of their M.E.? As you might expect, these test results strongly suggest the latter.


The same is true of multiple chemical sensitivity syndrome (MCSS); symptoms of chemical sensitivity are part of the core symptoms of M.E. and have long been associated with M.E.(as well as with several other autoimmune illnesses such as multiple sclerosis and Lupus) and so there is no need for an additional diagnosis of MCSS to be made. Just because you may fit a definition of Fibromyalgia, or MCSS, or irritable bowel syndrome (IBS) this does not mean that your symptoms are caused by the same aetiological or pathological process, or will respond to various treatments the same way, or will have the same prognosis as those people who have primary Fibromyalgia, MCSS or IBS, or anything else. See M.E. and other illnesses and The misdiagnosis of CFS for more information.


See Myalgic Encephalomyelitis: The Medical Facts for more on the prognosis of M.E. and the 3 Part M.E. Ability and Severity Scale: a tool for monitoring the course of your illness over time.

 

 

27. Can I or should I still donate blood if I have M.E.?

In some countries M.E. is not specifically listed as an exclusionary illness which prevents you from legally donating blood while in other countries M.E. sufferers are specifically banned. If you have M.E. (or even suspect you have M.E.) however you should not donate blood whatever the law states because of the possibility of infectious agents being passed on through your blood.  This is a real possibility.

 

 

28. Am I at a greater risk of contracting cancer because I have M.E.?

Sadly, there is some evidence to suggest that this is the case. BUT it is good to know about this possible increased susceptibility to cancer, so that we know how important it is to do what we can to protect ourselves beforehand. That means avoiding known carcinogens such as air pollution, cigarettes and alcohol, high levels of EMF radiation, deep-fried or burnt food and chemicals in food (eg. nitrates) and personal care products (eg. SLS and some hair dyes), etc., investigating and taking substances which may have anti-cancer properties such as antioxidants (vitamins A, C and E, selenium, zinc and mixed natural carotenoids) and avoiding overexertion (as this increases free radicals).

 

Problems with methylation, left untreated, may also increase cancer risk. The Good Health in the 21st  Century book explains that decreased glucose tolerance alone increases risk factors for some cancers.

 

In essence, the things that reduce your cancer risk are also the same things that are involved in treating M.E. in the best way possible anyway.

 

For more information see the short article: Th1 and Th2, cancer and M.E.


If you already have cancer (and M.E.), see: Say No to Cancer and Alternative Medicine: The Definitive Guide to Cancer and The Natural Way to Heal: 65 Ways to Create Superior Health. Books such as The NEW optimum nutrition bible  and to a lesser extent (the focus here is more on doing what you can to avoid cancer in the first place) Dr Atkins Vita-Nutrient Solution: Nature's Answer to Drugs each have useful chapters on how to potentially improve your outcome with diet and supplements and are at least well worth a read also (although you should ignore 100% of anything they have to say about treating ‘CFS’ as this will be irrelevant or inappropriate with regards to M.E.). If you cannot afford to buy these books, please email me for other suggestions.

 

 

29. I’m overwhelmed trying to work out which supplement brands to buy, can you help?

I’ve recently created some Amazon lists which feature some of my own favourite brands of supplements and vitamins, and also other items and tools of use to the M.E. patient. The main reasons for doing so were to make my own supplement purchasing tasks easier by having links to all the different products in one place, and also to save me time each week from finding the links to individual products each time someone asked me for one.

 

Patients that have very little time online may wish to use these lists as a quick way to get a starting point for their own purchasing decisions, and so I am including links to them here for those that are interested. (I’ve had a lot of positive feedback for including such information.)

 

Click here to view the Amazon Quicklists page on HHH.

 

Amazon uses the term ‘wish list’ to describe a list of products created in this way, but I’m using it instead as a ‘recommendations list’ or ‘favourite things list.’ I receive no monies at all from anyone choosing to buy any supplement or device or tool from these lists, and highly recommend that patients shop around and find the best deals and products for them, and which best suit their own individual needs, at whichever other retailers they may prefer.

 

 

30. I’m having one of those days where I just don’t want to take any more supplements, what should I do?

Dr Sherry Rogers explains that when you have one of those days when you just really don’t feel like taking any supplements, you should listen to your body and have a day off. Our bodies can only take in so much for so long before it has to take some time to assimilate it all and put it to work.

 

It may actually be a good idea to have one supplement-free day the same day each week.

 

On this day you might plan to either take no supplements at all, or only those things that would make you feel worse that day if you didn’t take them; this may include vitamin C, B vitamins, betaine HCl and digestive enzymes (and any prescription drug that should not be stopped suddenly). Vitamin C is probably best taken every day as going from a high dose one day to none at all the next day may negatively affect immunity for a short period of time. Vitamin C doses should be raised slowly and reduced slowly, so the body has time to adapt.

 

With the above caveats, you may even choose to take supplements only every second day.

 

 

31. Notes on applying for the appropriate/necessary benefits/welfare/disability support

The rules and procedures for applying for and qualifying for social security payments due to illness vary considerably in each country and so a comprehensive analysis of all of them is another (very difficult) whole essay in itself. There are a few things that might be useful in many cases however, and these include:


* Always keep photocopies of everything you send in for your own records (and in case they lose anything).

  • Having test results which show abnormalities can only help your claim so get appropriate testing done if at all possible. (This will also help you to help confirm your diagnosis if any doubt remained). See Testing for M.E. for details.
  • If the doctor who is helping you with your claim is a GP, it might be useful to ask this doctor to give you a referral to a specialist (one who is at least somewhat educated about M.E.) as this may carry far more weight. (Illogically, this will likely be true even if your GP is very knowledgeable about M.E. and has been treating you for years and if the specialist knows very little about M.E. and has only seen you for a few minutes!)
  • Keeping a daily activity log for a week or so may also be useful in making it very clear to everyone involved your exact level of disability and exactly how your illness affects your daily life.
  • When you fill in all the various forms which ask you to explain your level of disability and what you can and can’t do, remember that you should NEVER fill them in as if they were asking you about what you can do on your ‘best possible day.’ For example, if you are asked if you can leave the house and you say that yes you can, it will very likely be assumed that this is something that you can do easily, and even daily – without any real issues. This will cause very serious problems for you if the facts are that yes you can leave the house; but only about once a month or so, and only when you can have complete rest for a week beforehand and if even then you’ll also spend another two weeks collapsed and very ill from the outing afterwards. You get the idea. These types of forms typically do not allow for or understand the variability of M.E. (or any other illness) and so to avoid misunderstandings and dangerous (and utterly disastrous) overestimations by the relevant agency about your physical and other abilities, you must always fill in forms as if they were asking about what you can RELIABLY do; What are you able to do every day? What can you still always do even on your worst days? How much or what are you able to do each day without this activity worsening the severity of your condition over time?

 

US links: Dealing with a flawed Social Security Disability system: Guilty until proven innocent and How to process the social security disability application and get approved: Filing for Disability Benefits

Australian links: ACOSS Ten Myths & Facts about the Disability Pension

UK links: Benefits and Work website information on DLA and incapacity benefit

Please send any futher information or links on this topic to HFME.

Remember that it is easy to spend a lot of time chasing symptoms but that symptom removal is a (very welcome) side-effect of a deep healing program!

Other relevant HHH pages