Wolfe Protocol: ME/CFS

The first port of call for anyone with ill health should be their GP, who should ask you plenty of questions, give you a physical examination, and arrange for extensive blood tests to see if any identifiable/medically treatable issues are presenting. Devasahayam et al. (2012) found that GPs make incorrect diagnoses of ME/CFS roughly 50% of the time so it is important to ensure all relevant lines of enquiry have been investigated thoroughly

I should note that I am an independent health researcher with no medical training and an idiosyncratic approach to Myalgic Encephalomyelitis (M.E. or ‘ME/CFS’) research. I would, however, like to help others to maximise wellness, so I felt I ought to share the helpful things I have learnt on my journey. The advice given in this guide is based upon:

N.B. As with all investigation/treatment relating to ME/CFS, interventions should follow an individualised approach; what is found to be efficacious for one is seldom applicable to all

A Swiss immunologist once described personal health & well-being to me as being much like a house supported by four main pillars, all of which need to be in good order or the whole lot can stack! Such ‘holistic’/’integrative’ health approaches are particularly important in dealing with ME/CFS, a complex multi-system neuroimmune disorder. Each of the four pillars is founded in the following, fortifying which usually helps us on our way down the road to recovery:

  1. A constructive mentality and a spirit of openness and acceptance
  2. A regular, healthy, balanced diet and supplements to ensure optimal nutrition
  3. A sensible amount of physical activity, paced according to what is sustainable
  4. A suitable rest regime, allowing for optimal daytime rest and restorative sleep

 

1. Be expressive: Avoid bottling up emotions, it’s healthy to have a good shout/cry every once in a while if that’s how you feel inside. However do not allow yourself to dwell on negativity e.g. allowing oneself to feel unduly anxious, downbeat or resentful – this tends to do far more harm than good (adrenaline released can place the system under strain); think of bad vibes/dwelling on things as simply being a waste of energy we cannot afford to lose

Coach yourself: Convince yourself to put all feelings of negativity and defeatism to one side, be as pragmatic/stoical as possible, and adopt constructive mantras (internal or externally expressed). Know that we can reasonably expect to overcome most challenges in life and that to worry or agonise over those that may appear insurmountable in the short to medium term achieves nothing, and may well set us back; instead we must do our best to live with, and work around such problems, while we explore the best ways to overcome them

If you have a negative thought brought on by the challenge of living with the illness then turn your thoughts from the things you used to be able to do/wish you could now do to the things you will be able to do as your wellness improves and how it will feel to feel more your old self again. Close your eyes, take some slow deep breaths, pausing before slowly exhaling, and take yourself to that place/state in your mind. This is therapeutic on a number of levels

DreamIsland

Be Proactive: Instead of dwelling on illness/incapacity, pro-actively take an interest in the things you can do and the relationships you are able to have/enjoy. Many people with ME/CFS (PWME) find creative pursuits, however zany or minute, help bring them pleasure, keep the mind engaged, curb boredom, take their minds off the illness, and begin to build goals and structure into their lives once more

Aid Rest & Relaxation: Where possible, engage in mood lightening/relaxation techniques e.g. meditation, watching comedy/sharing a joke with someone, taking a positive interest in something, and enjoying forms of physical therapy e.g. gentle, warm sunlight, hydrotherapy, acupuncture and massage

Mitigate against adverse social effects: None of us are proud of our illness, and personal health is just that, personal, however it is important to be candid about ME/CFS with those who matter to us, and to encourage them to try to understand what it is that we face e.g. this video (without labouring things). It is a huge bonus, and relief, when close friends/family members are able to empathise, to support us, and stand by us/stick up for us when the going gets tough. That said, one must know when to quit – some people will simply never understand and that is their bad, no use ‘banging your head against that brick wall’!

 

The ‘Freeze Frame‘ technique can be used to mitigate against stress (see my Leaky Gut Protocol). CBT/NLP is often helpful for those who struggle with stress, anxiety, depression & motivation and many find EFT and reverse therapy beneficial in re-fortifying this pillar

2. Stay hydrated: You should aim to drink a minimum of 2 ltrs of water during the day, but be wary of drinking too much in the evenings – this may disturb sleep (full bladder). Always try to avoid eating within half an hour of drinking, and drinking within a couple of hours of eating (or you may impair digestion/nutrient absorption)

Water retention: If you experience Orthostatic Intolerance (OI) ( e.g. NMH/POTS) related issues (common among ME/CFS patients, consult your GP) consider taking small amounts of unrefined sea salt with food throughout the day. Patients with osmotic diuresis/polyuria should ideally drink fluids that are at least isotonic and ideally hypertonic

RecommendedWater

Eat regularly: A minimum of three square meals a day, each at sensible times. Try to eat as soon after you get up in the morning as possible, make lunch your main meal and do not leave dinner too late. Try not to snack too much between meals, and certainly avoid ‘high GI‘ snacks. OI patients may opt to eat ‘little and often’ e.g. by including ’11ses’ and ‘tea’ between breakfast-lunch and lunch-dinner, and reducing the size of meals, as this reduces the effect of blood being drained from other regions to service the gastrointestinal system

Place emphasis on Protein: If there is one thing the healthy human body needs it is an adequate supply of amino acids for fortification/cellular repair. All too often carbohydrates crowd out proteins in Western diets, and over consumption of (refined/simple) carbs can actually enhance your protein burn rate (already high in ME/CFS)! You should aim to eat at least 75g of protein per day, or a portion of protein rich food about the same size as your clenched fist at each meal. Carbohydrates also require more blood supply to digest and hence intake should be limited for those with OI

Build variety into your diet: Rather than eating a particular simple ‘staple’ fairly exclusively over long periods e.g. bread/potato/white rice (implicated in ‘leaky gut‘/acidosis of the gut) try a mix of ‘complex carbs‘ (preferably ‘natural’ ones e.g. fruit and vegetables). Refined carbs should be avoided by those with OI in particular

Evo-Gut

Aim for Blood Sugar BalanceLow carbohydrate protocols have demonstrable efficacy and achieving stable, balanced blood sugar levels is viewed as being very important by many experts as it is held that boom and bust glycaemic cycles can cause systemic stress that contributes to many of the symptoms of ME/CFS. Be aware that significant dietary modification always has an impact on how you feel, and carbohydrate moderation is no exception – expect a week or two of feeling lousy while metabolic systems re-adjust

Sugar and Sleep: When blood sugar levels dip sufficiently adrenaline is secreted to stimulate the release of sugar reserves from the liver so along with transitioning to a low carb diet, ensure that a modest amount of ‘complex carbs‘ are included at dinner, particularly if you experience inexplicably disturbed sleep or receive hypoglycaemic AM (fasting) blood test results. Also consider having some protein after dinner as it encourages the release of the hormone glucagonwhich counteracts insulin, helping to maintain sugar levels

Beware of leaky gut: If you show signs of gastrointestinal disorder e.g. ‘Irritable Bowel Syndrome‘ (IBS) and/or are interested in finding out more about low carb, gluten/dairy free dietary protocols it then see my Leaky Gut guide

Beware of ‘bad bacteria’ and fungi: These can take control in your gut e.g. Candida Albicansparticularly if you don’t watch your intake of sugar/yeast. Far too many of us end up with diets that are low in natural anti-microbial agents and high in precisely the stuff such nasties like to feed off e.g. high GI/high refined (carbohydrate) foods – particularly when you consider the impact that chronic illness can have on quick-fix snacking vs. preparing proper, balanced mealsTry to include anti-fungals in your diet, such as virgin coconut oil, garlic, onions and spices like chili and cayenne pepper. Microbial, and allergenic insult can be highly disruptive in the bladder too e.g. ‘Irritable Bladder Syndrome

Consider taking probiotics: Start with probiotic yogurts (mild, beware of sugar content), building up to supplement form (strong, beware of the risk of inducing acidosis) e.g. acidophilus. If you experience Candida ‘overgrowth’ (Candidiasis) you may also need to reduce  sugar intake (both natural and processed e.g. carbs in general) until it is under control

Get plenty of vitamins: Preferably through fresh fruit/veg rather than relying purely on supplements. A good multivitamin and a vitamin B and C complex are both recommended. PWME who experience muscle pain/FM and/or kidney troubles should take note of the anecdotal evidence linking these issues to problems with certain foods (inc. fruits/berries) containing oxalates, and should consider taking Vitamin B6 and Calcium citrate

FishOil

Mitigate against inflammation: Take fish oils, specifically EPA, GLA and Omega 3, and also consider N-acetylcysteine (NAC) as, among a host of other benefits, critically it inhibits NF-κB (believed to be a key culprit behind many of the inflammation-linked symptoms of ME/CFS), and increases resistance to/ameliorates certain viral infections. Also consider taking other antioxidants (to inhibit NF-κB activity), especially Turmeric and Zinc (in moderation), but also oreganothyme, and clove (also believed to have anti-parasitic properties). A combination of extracts has been shown to be most effective

Support the immune system: Natural-ish supplements such as Vitamin C, Beta GlucanColostrum and Shiitake/Lingzhi (Reishi) mushrooms can be effective in helping to guard against viral infection

Support cellular vitality: With D-Ribose (found to be highly effective in boosting energy levels by a high proportion of PWME, including myself), CQ-10  (e.g. found in fish/meat/dairy/grains) also found to be useful for disturbed sleep/cognitive functionmagnesium (increasingly scarce in soils > foods, drinking fluids), glutathione (e.g. found in undenatured whey protein shakes), L-Carnitine (e.g. found in meat/dairy products) and betaine (e.g. found in grains, shellfish and broccoli)

Support detoxification processes: With Chlorella and Milk Thistle (liver support) and

Consider Vitamin B12 & Vitamin D: An insufficiency of either can cause chronic fatigue

Viral Infection: Further to the somewhat ‘preventative’ advice given (throughout this guide), if you feel you are coming down with a virus the following come recommended by others:

Drugs

All too often NSAIDs (ibuprofen/aspirin) and/or antibiotics are prescribed; these are typically ineffectual and can cause complications e.g. damage to the gut

Avoid alcohol: This dehydrates/exacerbates symptoms, is often already present in the blood of PWME (thanks to microbial overgrowth), and is a depressant. Furthermore, alcohol contributes to blood sugar level instability in a number of wayscan lower immunity and irritates the gut and the bladder, even when taken in moderation

Avoid allergens: If you have grounds to believe you experience food allergies or intolerances and have the means it is as well to have these investigated. ‘(Oral) immunotherapy‘ is an option but is not always effective – some sensitivities are not strictly allergenic reactions

Avoid chemicals: Buy organic if you can afford to and take care to avoid synthetic colouring and flavouring (certain e numbers), preservatives (Salicylates), and sweeteners (Aspartame)

Avoid glutamate/aspartate: Foods relatively high in neurotransmitters associated with excitotoxicity and neuroinflammation include:

  • Grains (especially wheat, barley, and oats)
  • Dairy products (especially cheeses)
  • Beans (especially soy and lentils)
  • Seeds (especially sunflower, pumpkin)
  • Nuts (especially peanuts, cashews, pistachios and almonds)
  • Diet drinks (containing aspartame)
  • Prepared foods and soups
  • Meats (especially rabbit and turkey)

Foods relatively low in glutamate/aspartate include fruits, vegetables, potatoes, lamb and eggs, and tree nuts e.g. pecans and walnuts (Symes, 2013)

Other things to avoid: If you experience OI, it may be best to avoid:

  • Breads and grains (except for oats, eaten in moderation)
  • Wheat based products like pasta, pizza, cake, biscuits etc
  • Crisps, chips and other highly processed/’junk food’
  • Sesame, nuts, peanuts and peanut butter
  • Tomatoes, potatoes, peppers, spinach, artichokes, peas, mushrooms, rhubarb, olives
  • Fruit, dried fruits, and fruit juices
  • Smoked meats
  • Seafood
  • Egg whites
  • Margarine, mustard, vinegar, mayonnaise
  • Spices and herbs (except salt and chives)
  • Herbal tea
  • Sweets & Chewing gum

 

A dietician/nutritionist, particularly one attached to/recommended by a ME/CFS specialist, should be able to provide you with testing and personally tailored advice on these matters

3. Activity:

Lack of activity destroys the good condition of every human being, while movement and methodical physical exercise save, and preserve it” (Plato, 428 – 348 BC)

Virtually every PWME who has recovered or is in remission will tell you that restoring physical functioning and strength is an integral part of a successful recovery strategy. It is important to bear in mind that if you try to push yourself before your health and energy levels are stable you may do more harm than good however

The Groundwork – Tension: ME/CFS and OI expert, Dr. Rowewould appear to agree with Plato“complete inactivity has tremendously deleterious effects on the body”. In his latest research, he has been exploring the link between nerve and muscle tissue restrictions, reduced levels of activity, nerve sensitisation, and the amplification of some symptoms of ME/CFS

Dr. Rowe proposes that this chain of relations may help explain why some of the young people he has treated for ME/CFS and OI with interventions that include physical activity have suffered ‘payback’, or Post-Exertional Malaise (PEM). He suggests therefore that physical activity is likely to be better tolerated, and the intensity of some ME/CFS symptoms reduced, if one focuses on improving peripheral movement restrictions, or NeuroMuscular Tension (NMT), by pursuing:

Please note: NMT therapies (listed/colour coded in order of lowest intensity above) are likely to elicit a worsening of some symptoms e.g. ‘fight or flight’ type effects such as feeling ‘wired’, which has the potential to impact upon restfulness, in the following 12-24 hours initially, until nerve ‘glide’ is improved, better tolerated, and thus central and sympathetic nervous system stimulation through physical activity is reduced

The most sensible way to approach NMT is dynamic, gently graduated application. Adapt to any significant flare in symptoms accordingly e.g. wait 24-48 hours before recommencing NMT efforts and reduce intensity as appropriate. Furthermore, it is perhaps most sensible to apply direct methods of nerve mobilisation firstly briefly to test for neural sensitisation e.g. by observing the impact of nerve mobilisation over 12-24 hours and then, later on, as a therapy only once:

  1. The illness-inducing effects of any other complimentary physical therapies (manual lymphatic drainage/acupressure etc) have peaked *
  2. Any other source of nerve interference e.g. the activity of GI pathogens is dealt with
  3. Indirect methods are well tolerated, and a brief direct method test produces a markedly reduced increase in symptoms after 12-24 hours compared with the original test

* Many PWME appear to have lymphatic drainage/flow dysfunction so it is advisable that they address any such issues before proceeding with steps toward physical rehabilitation (to minimise associated ill effects, which can complicate such efforts). I personally have found manual lymphatic drainage beneficial in terms of alleviation of inflammation/discomfort relating to back/shoulders/neck, congestion and myalgia, and eradication of sinus problems (‘nasal release’)

NeuroMuscular

The Groundwork – Breathing: Hyperventilation/hypo-inflation of the lungs and hypocapnia (low Carbon Dioxide absorption) are often found to be an issue in PWME. Risk factors include:

  • Playing a lot of sport *
  • Structural, or muscular, tightness of the trunk, including thoracic/rib cage *
  • Bad posture e.g. slumping (spine must remain straight day and night) *
  • Poor dietary discipline e.g. overeating, or lack of essential nutrients
  • Poor sleep habits e.g. sleeping on one’s back
  • Emotional aspects e.g. stress, anxiety, anger
  • Lack of physical exercise

‘Chesty breathing’ habit, linked to hypo-inflation of the lungs, is a corollary

Buteyko method breathing comes recommended (requires discipline), and Naltrexone is sometimes prescribed. I found that I was not using my full lung capacity and, having cleared the lower part of my lungs and re-inflated them fully using proper diaphragmatic breathing, now rarely experience breathlessness and may hold my breath for twice as long as before!

Activity options: Below is a range of activities listed in order of lowest intensity, for PWME to consider, once they have done the groundwork:

  • Delicate dorsal rotation ~ improves neuromuscular tension/lymphatic drainage
  • Gentle stretching ~ helps replenish muscles/remove acid/toxins ~ see an example
  • Slow marching on the spot for a min ~ improves circulation and physical functioning
  • Light home exercises e.g. PilatesYoga, Tai Chi ~ improves neuromuscular tension
  • Short walks, light swimming ~ ‘sculling’ is one of the least exacerbatory techniques *
  • Gentle cycling (ideally recumbent, until OI improves) *
  • Steady resistance band leg exercises ~ (recumbent, when NMT improves*
  • Light jogging ~ in proper running shoes & on a soft surface (when NMT & OI improves)

Recumbent activities/exercise are preferable as these negate orthostatic stress and are also typically less likely to (over) stimulate the (confused) sympathetic nervous system -particularly those that focus work on areas away from the core. Further, more in depth info is available here. Gentle sculling  also aids lymphatic circulation, which is a positive thing but means that it is best to do this in conjunction with, or following, a broader lymphatic drainage program or you may expect some sickness as a result of stimulating lymph backlog

RecumbentBike

PacingAs those with mild to moderate ME/CFS recover, the temptation is to push themselves to get back to normality, and to become more and more active. Graded Exercise Therapy (GET) has attracted a lot of criticism as it can cause people to relapse if they are not first adequately conditioned to begin, and sustain, exercise programs, and is often too applied too intensely/inflexibly

It is very important to listen what your body is telling you and to pace yourself/manage your ‘energy envelope’ accordingly when it comes to virtually everything you do that requires exertion, from demanding physical activities right down to prolonged moderately mentally stimulative activity. This doesn’t just mean planning for activity it also means actively planning for periods of rest, important not just for muscle recovery, and to avoid ‘crashing’, but for the lowering of systemic stress and  the replenishment of energy reserves

Always take small steps when working out sustainable levels of activity and never try to hit the most you feel you could manage, always ‘leave plenty in the tank’ for tomorrow. Over-exercising can promote the build up of carbonic and lactic acid (identified as particularly problematic in ME/CFS), cause the (further) release of stress hormones, and exhaust energy supplies (including backup stores). Advice coming out of recent studies suggests that shorter periods of anaerobic exercise e.g. 30 seconds to a few minutes in duration, followed by rest/recovery periods double the length of the exercise duration, appear optimal for analeptic (restorative) exercise in ME/CFS

After a good night of sleep all fatigue (mental and physical) symptoms should be back to a baseline level following activities; if, instead, you experience significant ‘payback’ then commit to ‘do half’ next time and continue to reappraise the impact that these steps have. Going beyond 50-60% of your maximum normal potential heart rate (typically around the 100 bpm mark) is to be avoided at all stages of recovery. Aerobic exercise, particularly high threshold, is invariably counterproductive. It is important to bare in mind that some will find even relatively mild activity puts them over this ceiling. Here is further detail re: where to draw the line and why

The following will aid muscle repair and recovery:

  • Always gently warm up, then stretch gently prior to activity
  • Spend 5 mins or so taking slow deep breaths to ensure good oxygenation as you do so
  • Always warm down and stretch post-activity, then:
  • Ideally administer/receive a light ‘sports massage‘ on the areas worked if possible
  • Ideally apply a cold compress to your back/lie on couple of bags of frozen veg: 3-5mins
  • Ideally then have a warm (not hot) wash ~ warm/cold combination eases inflammation

The bare minimum: Try to get a fair amount of fresh air and exposure to sun light (vital source of Vitamin D, important for immune functioning) e.g. an average of 10 mins+ per day, particularly between 11am-3pm. Also try to maintain a healthy posture as much as possible ~ maintain an uplifted posture while standing/seated and move about as often as possible. Suboptimal posture maintained for prolonged periods may excite irritable nerves/tense muscles, and impede blood perfusion, respiration and lymphatic drainage/flow

Evo-Posture

Avoid excessive dorsiflexion posturing: Allowing your upper leg(s) to rise past 70 degrees from straight extension places our (sensitised) nerves under tension e.g. they are about 70 degrees pas straight for the penultimate man above and 90 degrees past straight for the ‘modern man’, who is also stooping/craning his neck, also bad news for neuromuscular tension!

Avoid vertebral compression: Staying in any position (especially sat upright) that places your vertebrae (particularly lower) under compression for any significant period of time can contribute to local nerve sensitisaion, and associated discomfort/back pain

Healthy seating: Use an air cushion (to provide mobility), in combination with a kneeling chair, a high stool, or a reclined seat of another form (to mitigate against nerve tension by keeping hip flexion at <70 degrees). A reclining chair that simply pivots on its axis will bring only minimal (OI) relief and may even contribute to cerebral hypertension (see below); instead you need a chair that allows the backrest to recline somewhat, relative to the seat. Also consider the use of a lumbar support when reclined. The following links provide further detailed examples re: general good vs. bad posture (ignore “30 mins fast walking” and remember sitting with one’s feet up is often advisable for those with OI): Link 1 | Link 2

Reclined-Bound-Angle-Pose

This yoga position demonstrates lumbar support, a healthy angle of hip flexion, and can help you work on gently stretching muscles/easing vertebrae associated with discomfort in ME/CFS

OI friendly regimes: If you experience OI related issues then having your feet up/wearing compression garments can help to mitigate against symptoms. Ideally one should always take breaks to get up and move around a bit but be mindful of the resultant drop in blood pressure/compensatory increase in heart rate. Also beware of allowing yourself to get too warm, PWME usually have difficulty with thermoregulation due to dysautonomia and the result can be loss of salt to sweat (which can lower blood volume, and hence blood pressure), as well as the dilation of blood vessels (which lowers blood pressure)

OH-SH Paradox: Some ME/CFS patients experience supine (lying) hypertension (high blood pressure), often along with orthostatic intolerance: hypotension (low blood pressure). PWME ought therefore to take a two-pronged approach to managing OI: avoiding prolonged periods spent standing still and avoiding lying down as much as possible during the day

Many PWME wake with a headache and this may relate to cerebral hypertension induced in a supine sleeping position. Transdermal nitroglycerin (smooth muscle relaxant) patches are sometimes issued to provide some relief. This supine hypertensive capacity may unfortunately be enhanced, initially at least, by efforts to mitigate against the effects of OI and nerve sensitisation by adopting recumbent/raised leg positions

Avoid: High intensity exercise, particularly those that place strain on the upper body like rowing, gymnastics, horse riding, weight training and tennis, are best avoided as they will tend to exacerbate symptoms and may compromise recovery of the associated regions (e.g. nerve strain and irritation, neuromuscular strain, energy exhaustion, lactosis)

Some find chiropractors/osteopathy (Perrin Technique)/physiotherapy (neuromuscular work), hydrotherapy and acupuncture beneficial – ensure that treatment is tailored to suit a PWME

4. Quality of sleep: Try to ensure that you:

  • Avoid lying/snoozing in bed as much as possible during the day
  • Avoid eating a large meal within a couple hours of going to bed
  • Avoid strenuous activity around bed time
  • Avoid interactive activity within an hour of bed time, especially computer based
  • Avoid leaving thinking/planning time till bed time
  • Avoid leaving electrical devices remotely close to your bed turned on
  • Have a dark, cool, quiet, odor free/fresh air infused sleeping environment
  • Go to bed when you feel tired enough to sleep, try to keep to regular times
  • Use just the right size/number of pillows (so that neck is straight/head not tilted)
  • Place a pillow, or fold of duvet, between your knees when sleeping on your side
  • Avoid sleeping your back; if you must: use a thin pillow + pillows under knees & lumbar
  • Avoid sleeping flat on your front; if you must: use a single, thin pillow
  • Avoid curling up into a feotal position, keep your spine reasonably straight
  • Sleep with your head elevated if you experience OI *
  • Avoid oversleeping as this will likely undermine quality of sleep subsequently.** If you experience OI then this is doubly important ***

A degree of head ’tilt’ minimises nocturnal diuresis, with most experts recommend tilting the head/upper body by 10-15 degrees e.g. by placing bed wedges under mattresses; others advocate raising the entire body e.g. by raising bedsteads using bed raisers or bricks/tins for mild 2.5″ to 8″ inclines (2 to 6 degree elevation). Specially made raisers/adapted furniture may see higher degree of efficacy e.g. this study which involved 18″ elevation

Note: This may make it difficult to sleep on your side, or impossible to sleep on your front if it is a mid-bed incline, and may result in patients sliding down the bed during the night, at higher levels of incline

** If you allow yourself to sleep for much longer than is strictly necessary (on a regular basis) you may disrupt your biorhythms and ultimately undermine your body’s capacity to fully ‘switch off’ and hence its capacity to rest/recover during sleep. You may also encourage adrenaline release if blood sugar dips sufficiently (as outlined above)

**Sleep is time during which you could be taking on salt and water and thus restoring blood volume, and reducing the strain on tissues/organs. Experts suggest thatmore than 12 hours may interfere with the ability to keep up with fluid needs

Evo-Adrenaline

Avoid stimulants: Including adrenaline packed computer games (as above), ME/CFS is a neuroendocrine disorder, we have enough problems as it is without adding a steady flow of adrenalin into the mix! Caffeine and other stimulants can stay active in the system for 12 hours or more and, besides interfering with natural bio-rhythms (vital for proper rest/repair), they often have irregular effects on those with ME/CFS or FM. All forms of caffeine are known to irritate the bladder and it can also contribute to blood sugar level instability

If you have trouble getting off to sleep try a range of relaxation/breathing techniques; failing that consider reading for a while using a bedside light, or, if you’re really vexed, and adhering to the rest of the advice in this guide proves insufficient, you may consider taking:

Tryptophan exists naturally in many foods e.g. eggs, dairy products, beans and oily fish

Avoid: Amitriptyline if you demonstrate any reaction to it (other than enjoying the benefit of its normal anti-depressant and sedative effects). Many PWME experience hypersensitivity, to include chemical allergies/reactivity, and Epstein–Barr virus (EBV, or ‘glandular fever’, or ‘infectious mononucleosis‘, or ‘mono’) is believed to uprate allergic responses, sensitivities and to cause Drug-Induced Hypersensitivity Syndrome (DIHS) in some cases, which can render us reactive to medicines, including Amitriptyline

- – -

Example of a Wolfe Protocol daily routine ~ ‘Mild’ to ‘Moderate’ ME/CFS

  • Large glass of water as soon as you wake +Chlorella +D-Ribose + Vitamins
  • Rise when your body is ready (ideally after 8-10 hours continuous sleep)
  • Nice leisurely warm bath to relax you and aid circulation/warm up the back
  • Gentle rotations/stretching + Buteyko method breathing
  • Breakfast * 30 mins after drink +Mag (+Salt) +EPA/GLA/Omega 3 oils +CQ-10 caps
  • Large glass of water at around 10:30am (+Anti-microbial) (+Turmeric) +D-Ribose
  • Brief physical activity if you have the energy **
  • Muscle recovery steps + take time to relax
  • Undenatured whey protein shake at around 11am (+Salt)
  • Large glass of water at around 1pm +Chlorella +D-Ribose
  • Brief physical activity if you still have plenty of energy
  • Muscle recovery steps + take time to relax
  • Lunch * at around 1:30pm +Mag (+Salt)
  • Large glass of water at around 3:30pm +NAC +D-Ribose
  • Brief physical activity if you still have plenty of energy
  • Muscle recovery steps + take time to relax
  • Light snack at around 4pm e.g. egg/tuna/sardines salad +Mag (+Salt)
  • Last glass of water at around 6pm +Chlorella +D-Ribose
  • Brief physical activity if you still have plenty of energy
  • Muscle recovery steps + take time to relax
  • Dinner at around 6:30pm +Mag (+Salt)
  • Home made stock or a hemp protein shake at around 8:30pm (+Salt)
  • Relax with a film or book, but ideally not lying down flat, at around 9pm +L-Carnitine
  • Relaxing bath/shower before bed (go to bed as early as is feasible, ideally when tired)
  • Pro-biotic cap prior to going to bed, if well tolerated
  • Clear your head and focus on Buteyko method breathing as you settle down to sleep

+ Layer NMD strategy on top, starting with infrequent e.g. weekly indirect techniques (AM)

Engage in work/’projects’ in free time during the day, energy permitting, to keep the brain engaged, feel productive, and to avoid boredom and having too much time to dwell

+ Take Beta Glucan + Colostrum during ‘the virus season’ (colder months)

+ Take anti-histamine/nasal spray before bed if you experience disruptive allergies

* Meals should contain plenty of protein e.g. (probiotic) yogurt, eggs, meat, cheese, and only a modest amount of complex carbs e.g. low GI fruit, nuts, a small bowl of (pure) oats or wholegrain cereal (if you can tolerate other grains/gluten) at breakfast, and vegetables, chickpeas, beans, wholegrain brown rice/wild rice, jacket potatoes at other meals

** These physical activity periods should shift to being pursued every other day at the most when engaging in the (relatively intense) bottom half of the list activity options

Wolfe Protocol ‘Bare Essentials’ - Stripped Down Version: Wolfe Protocol Print Out

Example: Manual Lymphatic Drainage, Stretches and Exercise routines/options

Example: ‘Gentle Stretching’

Miscellaneous Tips

  • Use routine, and salient locations, for reminders
  • Use timers and calenders e.g. mobile phone alarms/timers, for reminders
  • Set reminders to drink regularly throughout the day (keep the alarm/glass out of arms reach so you are forced to get up and move about [if possible]) and to ask:
    • Am I minimising nerve tension/lumbar vertebral compression (lower back load)?
    • Am I using diaphragmatic breathing (slow pattern, seeing stomach rising)?
  • Consider keeping a sleep log e.g. times, quality, position, breathing upon waking
  • Adolescents in particular should be aware that whilst bathing can aid relaxation and make us feel relatively fresh and alert, over-washing can contribute to skin problems. Applying cool moisturiser to the face can be almost as refreshing as splashing one’s face with water, and I would advise people to use (hypoallergenic) moisturisers after washing
  • Consider the use of an SAD lamp if appropriate
  • Consider the use of ear plugs in the bath/swimming pools (prevent swimmer’s ear)
  • Whilst on your back have someone place their, or place your own, fingers either side of, and pushing gently up towards the inion (boney protuberance 2/3 the way down the back of your head) for 5-10 mins. This is a cranial manipulation technique called Fourth Ventricular Compression (4VC), which aids 4th ventricle flow of cerebrospinal fluid and thus enhances cranial rhythmic function and improves lymphatic flow

4VC

Diaphragmatic Breathing Training Tips

Examples of conditions that may hinder routine diaphragmatic breathing:

  • Structural, or muscular, tightness of the trunk, including thoracic/rib cage
  • Bad posture e.g. slumping (spine must remain straight day and night)
  • Playing a lot of sport (encourages chesty breathing)
  • Poor dietary discipline e.g. overeating, or lack of essential nutrients
  • Poor sleep habits e.g. sleeping on one’s back
  • Emotional aspects e.g. stress,* anxiety, anger

Computer games can be a source of adrenalin release/chronic hyperventilation

Chesty

I have found the following to be helpful in re-training my respiratory habits:

  • Habitual deep/slow breathing as part of my morning routine e.g. in the bath
  • Including breathing prompts in my alarm reminders for other things
  • Upright seated posture ~ freer abdominal motion
  • Irritable bowel and bladder issues addressed ~ freer abdominal motion
  • Mental checklist when going to bed, includes NMT release, posture and breathing

Headache Tips

If you wake with headache – particularly if you experience tinnitus with it (another sign of cerebral/intra-cranial hypertension) – a good way of making it go away is to:

  • Drink a pint of water with a little salt (not too much or the stomach won’t like it)
  • Get into a warm bath and a relaxed state (certain bath products can be therapeutic)
  • Place hands, or an object, behind your head and support it in the 4VC hold
  • Submerge the back of your head but keep the level of your head above that of body
  • Focus on nasal diaphragmatic breathing – watching stomach rise before chest
  • Listen to the tick tock of a bathroom clock and regulate your breathing until it is:
    • IN, 2, 3, (4), (5)
    • HOLD, 2, 3, (4), (5)
    • OUT, 2, 3, 4, 5, 6, (7), (8), (9), (10)

This method boosts blood volume, relaxes soft tissues, dilates blood vessels, flushes the cerebrospinal fluid – refreshing the brain, corrects (nocturnal) hypoxia/hypocapnia, reinstates healthy respiratory technique, helps control heart rate/palpitations, and helps to induce lymphatic circulation if you fully inflate/deflate the lungs. Also good before bed

Useful Links

Action For M.E. UK | afme.org.uk

M.E. Association UK | meassociation.org.uk

Dr. Myhill’s ME/CFS Wiki Site | drmyhill.co.uk

Dr. Teitelbaum’s CFS website | endfatigue.com

The Hummingbirds’ Foundation for M.E. | hfme.org

Phoenix Rising ME/CFS information network | phoenixrising.me

Miscellaneous ME/CFS related links | vitality101.com/helpful-links

Get Well From M.E. Community Youtube Channel | youtube.com/GetWellFromME

Chronic Fatigue and Immune Dysfunction Syndrome Association of America | cfids.org

 

DiSCLAIMER:    The advice given in this article is intended as a rough guide only. Individuals should tailor it to suit their own needs and should always fully research and consider the side effects/interaction effects of any new agent/process, in conjunction with consultation with (a) suitably qualified/trained physician(s). The author accepts no responsibility for any adverse effects arising from attempting to follow this advice

Wolfe Protocol © John H Wolfe (2014)

4 thoughts on “Wolfe Protocol: ME/CFS

  1. Pingback: 365 day Sleep Log ~ My Results | John H Wolfe's Blerb

  2. Emelia

    Thank you for shaing your thoughts. I really appreciate your effors and I am wajting foor yoir furthewr write uups thank you onfe again.

    Reply

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