A Doctor's Roadmap for Dealing with the Problems of ME/CFS
By Dr. Sarah Myhill, ME* •
March 17, 2010
The seeming triggers and comorbidities of ME/CFS differ from person to person. But until science finds a “silver bullet,” experienced clinicians know that better health depends on following some fundamental rules.
Dr. Sarah Myhill, MD, a UK-based fatigue specialist focused on nutrition and preventive medicine,* lays out these rules, plus a list of interventions and tests that often help with specific symptoms. This information is excerpted with kind permission from an article posted in the “Fatigue” section of Dr. Myhill’s newly redesigned educational website (DrMyhill.co.uk)
CFS Checklist – Start Off and Check Your Treatment Regimen Here
….I used to do things one at a time in order to see what does and does not work. I now do things the other way round - treat everything I think to be important, get the patient better, then relax the regimen to end up with a balance between the patient's wellness and the toughness of the regimen.
The following is the program of treatment I go through with every patient. If I try to cut corners, I often end up missing important problems. The patient who thinks about their illness and works out things for themselves has the best chance of getting better. I can point you in the right direction, but you have to do the donkey work!
I suggest you print this checklist out and use it to find your way round the website! It lists the things I need to think of in the management of CFS.
Don't go on to the next stage until the earlier ones have been fully explored.
* * * *
STAGE 1: Make Sure It’s CFS
Is the diagnosis right?
Has known pathology been excluded; e.g., cancer, MS, autoimmune disorders? The two symptoms which are common to every case of chronic fatigue syndrome/ME are poor stamina and delayed fatigue. These are explained by mitochondrial failure. [See, “CFS - The Central Cause: Mitochondrial Failure.”**]
Indeed, it is the delayed fatigue which should determine how much or little you can do in a day. If you get fatigue the next day then you have overdone things and must pace more carefully. Actually this is true for everybody - athletes who do not observe this rule develop overtraining syndrome and worsen their performance.
Have a careful think about what caused your CFS…
as this will give a guide to treatment. Think about the time building up to the start of the illness, what the trigger was, which illnesses run in the family?
CFS is a diagnosis of exclusion.
Tests to exclude serious disease may be helpful, but even if they are all normal, you could still have other serious disease. The opinion of a good physician should always be taken to make the diagnosis. Recent onset of symptoms which may be worsening would suggest serious underlying disease.
* * * *
STAGE 2: Observe Six Fundamental Rules
• Adopt the 80% rule (which means: know what you are capable of in a day and do just 80% of that - 20% is "getting better" energy).
• Get enough mental and physical rest.
• Get organized.
• Accept help. Arrange for deliveries to house. Delegate work.
• Prioritize: List the 10 most important things in your life, then ignore the last five. You can't do everything.
Quality sleep is essential to life. Don't be afraid to use tablets to restore the normal day/night diurnal rhythm. Sleep disorders: Avoid caffeine after 4 pm as it will interfere with sleep. [See “Sleep is Vital for Good Health – Especially in CFS.”]
It takes at least 6 months for body stores to replete. Supplements are for life. Everybody, regardless of whether they have chronic fatigue syndrome or not, should take a basic package of nutritional supplements. This is because Western agriculture has resulted in food which is deficient in essential micronutrients. We then have what I call the "bolt-on extras" for specific problems.
For people with fatigue syndromes there is a package of supplements to support mitochondria which one can either take empirically or, ideally, do the Mitochondrial Function Profile Test first to define this further. See “Nutritional Supplements, What Everybody Should Be Taking All the Time Even When Nothing is Wrong,” and “Mitochondrial Function Profile Test [no longer available to non-UK residents owing to overwhelming demand].
The two dietary problems most often linked to fatigue are a tendency to hypoglycemia and allergy. The starting point is always the Stone Age Diet, which is of low glycemic index and avoids the major allergens.
Avoid infections whenever possible:
At the first sign of a cough, cold or sore throat use vitamin A (not if pregnant), vitamin C, zinc, selenium and propolis [a substance produced by bees from resins with antimicrobial properties]. See “Viral Infections, Avoid Them and Treat Them Agressively.” If you don't believe you could have any deficiencies, then do the disease prevention screening tests.
Do a chemical clean up:
Throw out all the smellies in your house, keep the house well ventilated, avoid sprays, polishes, aerosols, new paints, new carpets, gas cookers and heaters, etc. See “Do A Good Chemical Clean-Up.”
Many of the above issues...
are covered in “The General Approach to Maintaining and Restoring Good Health.” Indeed for most people this is the most difficult part of treatment and for many people all they have to do to recover! It is tempting to miss out the bits that entail major lifestyle changes and cherry pick the easier changes, but you will just cheat yourself in the long term.
* * * *
STAGE 3: Fighting and Nurturing
The interventions below need to be done over and above all the interventions listed in Stage 2 above.
At this stage you should consider having the Mitochondrial Function Profile and bring into your recovery plan the nutritional regimen specifically designed to support the mitochondria.
Some interventions work for a high proportion of sufferers (B12, magnesium, D-ribose, Coenzyme Q10, etc.). Do as many of these things at the same time as you can. By the time you have been ill for several years, more than one thing will be wrong - you need to tackle them all at the same time to see improvement. The priority is to get well. Once you are better, these things can be knocked off one at a time to find out which is important. See “Pattern of Recovery.”
The maneuvers to try, in order of importance, are:
Feed your mitochondria:
See below “CFS - the Central Cause: Mitochondrial Failure.” Get magnesium levels checked if you are not doing the Mitochondrial Function test. See below “Red cell magnesium test, Treating magnesium deficiency.”
See “Pain.” This too is just a symptom - try to work out the cause.
Should be tried at some stage. Don't waste money measuring B12 levels, they are irrelevant. It is the response... which is important. See “CFS and B12 - Rationale for Using Vitamin B12.” Make sure you are on a multivitamin containing folic acid [along with] B12.
Correct adrenal or thyroid disturbances.
Getting gut symptoms right is central to getting the CFS right. Consider “Fermentation in the Gut and CFS.”
Low dose antidepressants:
Many CFSs do well on tiny doses of tricyclic antidepressants such as amitriptyline 10mgs, dothiepin 10mgs, trimipramine 10mgs at night. In these doses I would not expect much effect on depression.
Chronic low grade undiagnosed infection:
See “CFS - Can Be Caused by Chronic Infection.”
Can cause fatigue. Often driven by food intolerance and low magnesium levels. Helped by relaxation techniques.
Exposure at work to organophosphates (farmers), dog and cat flea treatments, human head lice treatments, Vapona fly blocks/sprays, woodworm treatments. Contaminated water. Any silicone implants - siliconosis? Gulf War Syndrome?. Chemical poisoning often leads on to MCS. See “Chemical Poisons and Toxins.”
MCS (Multiple Chemical Sensitivity):
Suspect if symptoms better out of doors, better in the summer, better away on holiday. Do chemical clean up. Eat organic where possible. See “Multiple Chemical Sensitivity (MCS) - A Common Problem and Often Triggered by Exposure to Chemicals.”
* * * *
STAGE 4: Considering Allergy
If you are still struggling despite having tried all the above (Have you? Have you really honestly done it properly?), then it is likely your problems are caused by multiple allergy to foods, to chemicals or to molds.
Get mold allergy tested:
Either by skin tests… or by going abroad to a warm dry climate, ideally for one month, but two weeks may give you an idea. Make sure that the holiday house is chemically clean. I know it is not easy, but it is important.
* * * *
STAGE 5: New Ideas
One of the problems with CFS is that it is a quack's charter! It is important to look at new ideas and treatments, but not before all the known treatments have not succeeded. Especially the psychological treatments should not be considered until the physical issues have been sorted….
* * * *
Disease Screening Tests
Magnesium Test - Red Cell
Adenocortex Stress Profile (salivary)
Thyroid Profile: Free T3 and TSH
Mitochondrial Function Profile
* This information is excerpted with kind permission from an article posted in the “Fatigue” section of Dr. Myhill’s newly redesigned educational website (DrMyhill.co.uk) ® Sarah Myhill Limited, Registered in England and Wales: Reg. No. 4545198. Sarah Myhill Limited, Registered in England and Wales: Registration No. 4545198.
** Dr. Myhill, with colleagues Professor Norman Booth of Oxford University and Dr. John McLaren Howard of Acumen, published the groundbreaking paper “Chronic Fatigue Syndrome and Mitochondrial Dysfuntion” in January 2009. It “presents evidence that chronic fatigue has a physical basis” - a dysfunction of the cells’ energy (ATP)-generating mitochondria - and that an “ATP profile” blood test is useful to measure degree of mitochondrial dysfunction and severity of illness. To read the full text of this free-access article, click here. And for background on the authors and the test, click here.]
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. Nor is it meant to take the place of the personal attention of your physician. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
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Just say no to anti-depressants, anti-anxiety meds with CFS-GWI
|Posted by: BeckieC
Apr 22, 2010
Diseases such as ME/CFS-GWI also open the field for charlatan supplement-pushers, too. I can't tell you how many times acquaintances start in on me about what type of supplements I am taking. They sell supplements through their multi-level marketing home businesses, where nobody has control of quality and efficacy, not even the FDA.
What is the difference between a Multi-level Marketing supplement pusher? And a vaccine manufactuer that profits from injecting soldiers with foreign substances, diseases they cannot get rid of? I can't see much difference. So I eventually push ALL of them out of my life. I already have 3 doctors treating my disease. Why do I need a non-medical professional telling me what to put down my hatch?
I am a Gulf War veteran, Desert Storm (1990). If I relied upon Army-VA and mainstream medicine, I would be dead from heart disease today. If I took every supplement that non-medical people push at me, I would have poisoned my system and ruined my kidneys on supplements full of multi-B that I cannot tolerate for elevated blood pressure and metals within each tablet.
My gut and my entire immune system were destroyed by Hep B cocktail vaccines administered pre-deployment in November 1990. I immediately grew so deathly ill, spending much time on the toilet that I could not deploy. I am not the only Medical Army Reservist that lost their health, their immune systems, their freedom to pursue any career to Hep B cocktails during that first Gulf War.
Instead of drawing blood tests to determine why colitis and chronic, recurring, massive infections persisted after vaccines, the Army-VA put me on Koncyl D or Metamucil, gut tranquilizers, and told me to seek psychological counseling. No psychiatrists were recommended because I exhibited none of the symptoms of mental illness or depression. 15 years went by before the VA finally stopped accusing veterans of stress and depression, as the single cause of their illness.
My very first civilian physician put me on several anti-depressants, anti-anxiety meds, that masked my diseases and my rapidly deteriorating health. Once I got off the antidepressants because they dulled my brain to the point I could no longer add a line of numbers without a spreadsheet or calculator, I realized how physically ill I really was. Depression is a non-issue, because my symptoms are completely counter to clinical depression. The words of "depression" almost killed my ability to successfully apply for federal employee disability, SSD, and VA service-connected disability compensation. There is no VA facility that treats GWI. In Texas, VA physicians deny that Gulf War Syndrome exists, and not such in medical records. That is 10 years since the VA determined that stress and depression could not possibly be causing such devastating sickness among the non-deployed veterans.
My adrenals no longer function at detectable levels, probably because antidepressants lower adrenals' cortisol production. In veterans, the adrenals are shrunken or atrophied. Veterans cannot sleep without some assistance. Deep sleep is the only time adrenals produce cortisol, even if they are undamaged.
Now, I take bio-identical cortisol eash morning and sleep for 2 additional hours while the compounded prescription drug recharges my cortisol levels. I get about 4 additional functional hours each day because of cortisol. Without it, I would be bedfast every day, rather than just 3 or 4 days per week.
Except for the 5 compounded, and 20 prescription drugs I take daily, I would never get any sleep, and I would never overcome the viruses I acquired through military vaccines. Unlike most veterans, I retained my vaccine records. I know exactly which vaccines I received, at 10 pounds underweight, too small to take adult-dosage vaccines.
I utilize a great deal of IV infusion and injectibles, because my gut does not process food or supplements. Supplements and food pass right through within a matter of minutes after eating or swallowing supplements. Supplements for the most part are a complete waste of money and hope, unless they are sublingual to bypass blood-brain barrier..
I appreciate Dr. Myhill, for all of her tips to my Gulf War Illness physician that controls my GWI-CFS. They both provide a small quality of life that I otherwise would not have. I admire Dr. Myhill for standing up to mainstream medical pracitioners, all veterans' mothers, spouses, whom drill it into veterans' heads that they are just mentally ill or depressed, not really sick at all.
A "good doctor" is so difficult to find.