M.E/CFS Experiences - The facts

According to the ME Association:

"Despite the fact that the Department of Health now accepts ME/CFS as a genuine medical condition, diagnosis can still pose a problem because ME/CFS symptoms are similar to those present in a number of other medical conditions. In addition, there are no examination findings which can confirm the diagnosis. This means there has to be a process of elimination (the exclusion of other conditions) before a diagnosis of ME/CFS can be made.

Several different diagnostic criteria have now been published in the UK, USA and Australia. The CDC criteria (ref: Annals of Internal Medicine, 1994, 121, 953-959) are frequently used when selecting ME/CFS patients for research studies.

However, these criteria have a number of defects (e.g. you have to have been ill for at least six months before CFS is confirmed) and anecdotal reports suggest there are a significant minority of people with genuine ME/CFS who do not have a sufficient number of different symptoms to fulfil the strict CDC definition. Such conditions may have a relevance when selecting people for research studies, but the delaying or withholding of a diagnosis on these grounds can prove to be particularly unhelpful in any individual case, as it can cause problems with employers, schools, benefit claims etc., and quite probably affect the individual's recovery if they are unable take sufficient rest early on and then manage their condition sensibly, rather than having to 'soldier on'. It is known that stress exacerbates the condition. "

According to Dr. David S. Bell, it is truly remarkable that a patient can feel so bad yet look relatively well. In his book The Disease of a Thousand Names [Lyndonville, Pollard Publications, 1991], he has listed the following symptoms for M.E. along with the percentage of M.E. patients who experience them.

The numbers in parentheses are the percentage of CFIDS patients who experience those symptoms.

1. Fatigue (100%) - usually made worse by physical exertion

2. Cognitive function problems (80%)

o attention deficit disorder

o calculation difficulties

o memory disturbance

o spatial disorientation

o frequently saying the wrong word

3. Psychological problems (80%)

o depression

o anxiety

o personality changes, usually a worsening of a previously mild tendency

o emotional lability (mood swings)

o psychosis (1%)

4. Other nervous system problems (100%)

o sleep disturbance

o headaches

o changes in visual acuity

o seizures

o numb or tingling feelings

o disequilibrium

o lightheadedness - feeling "spaced out"

o frequent and unusual nightmares

o difficulty moving your tongue to speak

o ringing in ears

o paralysis

o severe muscle weakness

o blackouts

o intolerance of bright lights

o intolerance of alcohol

o alteration of taste, smell, hearing

o non-restorative sleep

o decreased libido

o twitching muscles ("benign fasciculations"

5. Recurrent flu-like illnesses (75%) - often with chronic sore throat

6. Painful lymph nodes - especially on sides of neck and under the arms(60%)

7. Severe nasal and other allergies - often worsening of previous mild problems (40%)

8. Weight changes - usually gain (70%)

9. Muscle and joint aches with tender "trigger points" or Fibromyalgia(65%)

10. Abdominal pain, diarrhea, nausea, intestinal gas - "irritable bowel syndrome" (50%)

11. Low grade fevers or feeling hot often (70%)

12. Night sweats (40%)

13. Heart palpitations (40%)

14. Severe premenstrual syndrome - PMS (70% of women)

15. Rash of herpes simplex or shingles (20%)

16. Uncomfortable or recurrent urination - pain in prostate (20%)

17. Other symptoms:

o rashes

o hair loss

o impotence

o chest pain

o dry eyes and mouth

o cough

o TMJ syndrome

o mitral valve prolapse

o frequent canker sores

o cold hands and feet

o serious rhythm disturbances of the heart

o carpal tunnel syndrome

o pyriform muscle syndrome causing sciatica

o thyroid inflammation

o various cancers (a rare occurrence)

o periodontal (gum) disease

o endometriosis

o easily getting out of breath ("dyspnea on exertion"

o symptoms worsened by extremes of temperature

o multiple sensitivities to medicines, food and other substances

A list of CFIDS symptoms is misleading. At first glance it appears that almost every symptom possible is part of the list. This is another reason many physicians have not accepted the reality of CFIDS- there are simply too many symptoms. But a patient relating these symptoms does not list them in a random manner. They fit a precise pattern that is nearly identical from one patient to the next.

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