WELLINGTON REGION ME/CFS SUPPORT GROUP INCORPORATED

Providing information and support for people wih ME/CFS in the Wellington region. This website was previously known as Brainstorm

Guidance notes for GPs

We are grateful to Dr Sarah Myhill, MBBS, medical consultant to Action for M.E. (a U.K. national support organisation for M.E. sufferers), for her permission to preview her advice to her fellow GPs. The author of “Diagnosing and Treating Chronic Fatigue Syndrome”, she is also Honorary Secretary of the British Society for Allergy, Environmental and Nutritional Medicine.

The Wellington ME/CFS Support Group would like to thank the Christchurch ME/CFS Group and Dr. Myhill for their permission to reproduce this document.

Chronic fatigue syndrome is not a diagnosis in its own right. It is merely a description of a group of symptoms which may have many causes. The difference between chronic fatigue syndrome and ordinary fatigue is that the fatigue in CFS is:

  • Both physical and mental
  • Worsened by physical and or mental exertion
  • Delayed after stress. Usually at least 24 hours but may be up to three days

Predisposing/Risk Factors:

While CFS has many predisposing factors, most often there is a viral trigger. Important
predisposing factors are as follows:

  • Previous inability to deal adequately with a viral infection
  • Earlier use of the Pill or HRT
  • Past episode of anorexia
  • Shift work, disturbed steep or insomnia
  • Exposure to toxins such as pesticides, carbon-monoxide, silicone implants, heavy metals
  • Poor quality diet
  • First degree relative with fatigue
  • First degree relative with hormonal disorder such as thyroid problems, adrenal problems
  • High achievers who have to do everything perfectly
  • Inability to say no when asked to do a job
  • Athletes in heavy training
  • Teaching and health profession
  • Allergies
  • Past head injury
  • Any past overwhelming physical or mental illness

About three-quarters of cases have a clear viral trigger such as glandular fever, flu, gastroenteritis, chicken pox, etc. About one quarter just gradually develop their CFS, often as a result of a combination of the above factors.

Treatment:

Treatment is aimed at:

  • identifying the underlying factors which made that patient ill and removing them
  • insisting that the patient rest properly to give the body a chance to recover and
  • correcting underlying nutritional, hormonal, allergic and toxic factors

Rest:

It is vital that all patients reduce their activities to such a level that they never get delayed fatigue. This baseline may be very low, (PACING). Once a comfortable level of activity is achieved, a graded activity program is possible, whereby the amount done each day is gradually increased. If an increase in activity causes fatigue the next day, then the patient must reduce to their baseline again. It is useful that the activities are as varied as possible so that different muscles of the body and parts of the brain are exercised (SWITCHING).

Correction of Nutritional Problems:

Vitamins, minerals and essential fatty acids are the fundamental building blocks from which the enzyme systems of the body are made. They cannot be manufactured within the body, they have to be ingested. A minor deficiency of any one nutrient will cause inefficiency within enzyme systems and an early symptom of this is often fatigue. Therefore all patients should take multivitamins, minerals, essential fatty acids and vitamin C.In addition, it is very common to find low levels of magnesium. This must be checked by measuring intracellular levels and correction may only be possible with injections. Many patients do well on high dose B12, sometimes up to 2mgs of injected B12 daily. Most see improvement with a weekly injection.

Intolerances:

Intolerances and sensitivities to foods, chemicals and inhalants may present with a
multiplicity of symptoms. Intolerances are great mimics and can produce almost any group of symptoms. Tests for food intolerances are not reliable and all patients should do an elimination diet at some stage. Inhalant and chemical sensitivities are often diagnosed from the history. Treatment is avoidance or desensitisation. Mould sensitivity is a major cause of fatigue. Desensitisation is difficult and avoidance is the name of the game.

Hormonal:

These patients have a suppression of the hypothalamic/pituitary/adrenal axis with mild
hypothyroidism, hypoadrenalism, tow levels of sex hormones and often low levels of
melatonin. The latter contributes to the sleep disturbance. Hormone levels should be
measured in particular T4, T3 (serum levels), 24 hour cortisol and DHEA (salivary levels), oestrogen, progesterone (saliva) and testosterone (serum free testosterone). Low doses of the biologically identical hormones used to restore normal levels. All these hormones should be monitored if supplemented.

Sleep:

A feature of CFS is disturbed sleep. This may be because the biological clock has been moved on by several hours or because of difficulty dropping off to sleep or because of waking through the night. Sleep must be restored, if necessary by aggressive use of drugs.

Chronic Undiagnosed Low-grade Infections:

Any of these may present with fatigue. The most common offenders are gut infections which may due to yeast, bacteria (including helicobacter pylori) and gut parasites. These need to be identified with a stool analysis and treated appropriately. Helicobacter pylori is diagnosed by either blood or breath testing.

Urinary tract infections, pelvic inflammatory disease, dental sepsis, chronic prostatitis, bronchiectasis – all may also present with fatigue and tests should be done on clinical indications.

Depression:

It is not unusual for any patient with a chronic illness to become depressed. Depression is not, a primary part of CFS, but nevertheless needs treating in its own right. Most CFS patients react badly to normal doses of antidepressant. Should these be tried then use very tiny doses and build up slowly. For example, I often use amitriptyline to help with the sleep disorder and I would start off with lOmgs at night.

Laboratory tests

In conjunction with Dr Rosamund Vallings, MBBS, president, Assn of N.Z. M.E. Societies Since CFS is primarily an illness of exclusion and one that can affect every system of the body, Dr Vallings recommends a wide range of laboratory tests.

Biochemistry
Liver group
Creatinine
Electrolytes
Uric acid – if joint pains
Lipid Group
Glucose
Protein Electrophoresis
Total protein/albumin
FelBC
Ferritin
Immunology
Hepatitis Bs ag/ab
Hepatitis C ag/ab
HIV
Rheumatoid – if joint pains
ANA
Microbiology
MSU
Urogenital - if discharge
Swabs – culture: Candida/chlamydia
Throat swabs – if throat
symptoms
Faeces pathogens – if bowel symptoms
Giardia
Parasites
H.pylori, esp.
Sputum – if cough
Haematology
Full blood count
ESR
B12/folate – important if in low third of range, very important if high
MMA (methylmalonic acid) – a reliable B12 indicator
Endocrinology
T4
TSH (can be deceptive consider symptoms)
FSH – if female
24-hr cortisol (urine)
DHEA
Other
CRP
RBC magnesium
Immunoglobulins
Gliadin and endomysial
antibodies – reliable only for
fairly recent exposure. NB:
there may be reduced immune response if extreme debility.

and Surgery

Anecdotes have piled up over the years about the difficulties M.E./CFS patients have in recovering from anaesthesia. M.E./CFS can be an indication that certain organs, especially the liver, may be overtaxed and processes like cell metabolism disturbed. Any anaesthesia plan must consider this.These patients are usually hypersensitive to many medications, including anaesthetics (and vaccines). Histamine-releasing agents are probably best avoided. This group includes the thiobarbiturates such as sodium pentothal. The muscle relaxants in the Curare family are also potent histamine-releasers and should be avoided.

Any gases which are likely to be toxic to the liver are best avoided.

The magnesium and potassium depletion, which is common in M.E./CFS, can result in cardiac arrhythmias during anaesthesia. For this reason, it is recommended that the patient be given Micro-K using lOrnEq tablets, 1 tablet BID and magnesium sulphate 50% solution, 2cc IM 24 hours prior to surgery.

Because of the prevalence of low blood volume, care should be taken to hydrate patients prior to surgery and to avoid drugs that stimulate neurogenic syncope or lower blood pressure.

Suggest that your patient prepare for both surgery and major dental work by:

  • Taking 500 mg Vitamin C daily, plus a good multi-vitamin/mineral supplement
  • Taking homoeopathic amica, 4 per day, 2 days before and continue for 2 weeks

Personal Health Services assistance for M.E. patients

Some GPs may not be aware that M.E./CFS patients are eligible for domestic assistance, personal care and care support through Health funding. Recent Ministry of Health clarification is as follows:

“ME/CFS is considered a long term chronic illness. Other long-term chronic illnesses are cancer, emphysema, respiratory disease, and diabetes which are also ‘disabling’ long-term but are not considered disabilities. These conditions are funded by Personal Health. However, obviously the main issue is not what funding stream should be funding a service but what services are available. Carers should still be able to access carer support from their GP. Additionally, services such as domestic assistance and personal care can be accessed by the GP.”Clare Baxendale (Service Analyst, Disability Issues Directorate, MOH, 11/4/01.)

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