CFS/ME February 2016...

It's been a difficult week with my ME, just about every muscle and joint has been giving me pain and severe discomfort 24/7. Sleep has been difficult to get as I've been suffering with restless legs, and arms every night, so I have been taking med's to sleep and slow release painkillers, it takes the edge of the ME but also the edge off life. You can't win with ME every time you think you have it beaten it bites you back, and slaps you back down. It difficult to stay positive, just as it's difficult to move about and exercise or take care of yourself. In 20+ years I haven't ever been free of ME I have had some very severe days, weeks, months and years but on the other hand I have managed to hold it all together, despite being robbed of large sections of my life.
M.E. is not stable from one hour, day, week or month to the next. You never know when or what will throw you in to a relapse, its a very difficult living with this illness, I put off for a long time the use of a stick/cane and the wheelchair but I have both and sadly I have to use both at times and the times without are getting less.

https://youtu.be/nb-mkFxRpGM

Some one asked me at work the other day if my ME was like Multiple Sclerosis it was a genuine question ,so I went off looking up information for them on these two serious conditions, the old interweb is a handy tool...  the info below is worth reading.

Medical similarities between MS and M.E.
Multiple Sclerosis	Myalgic Encephalomyelitis
MS is primarily a neurological disease, i.e. a disease of the central nervous system (CNS).	M.E. is primarily a neurological disease, i.e. a disease of the central nervous system (CNS).
Demyelination (damage to the myelin sheath surrounding nerves) has been documented in MS.	Demyelination (damage to the myelin sheath surrounding nerves) has been documented in M.E.
Evidence of oligoclonal bands in the cerebrospinal fluid has been documented in MS.	Evidence of oligoclonal bands in the cerebrospinal fluid has been documented in M.E.
No single definitive laboratory test is yet available for MS but a series of tests are available which can objectively confirm the diagnosis with some certainty.	No single definitive laboratory test is yet available for M.E. but a series of tests are available which can objectively confirm the diagnosis with a high degree of certainty.
MS can be severely disabling and cause significant numbers of patients to be bedbound or wheelchair-reliant.	M.E. can be severely disabling and cause significant numbers of patients to be bedbound, wheelchair-reliant or housebound.
MS can be fatal (either from the disease itself or from complications arising from the disease)	M.E. can be fatal (either from the disease itself or from complications arising from the disease)
MS significantly reduces life expectancy.	M.E. significantly reduces life expectancy. (M.E. reduces life expectancy by a greater period than MS: see Table 3.)
Symptoms/problems which occur in MS include: impaired vision, nystagmus, afferent pupillary defect, loss of balance and muscle coordination, cogwheel movement of the legs, slurred speech, difficulty speaking (scanning speech and slow hesitant speech), difficulty writing, difficulty swallowing, proprioceptive dysfunction, abnormal sensations (numbness, pins and needles), shortness of breath, headaches, itching, rashes, hair loss, seizures, tremors, muscular twitching or fasciculation, abnormal gait, stiffness, subnormal temperature, sensitivities to common chemicals, sleeping disorders, facial pallor, bladder and bowel problems, difficulty walking, pain, tachycardia, stroke-like episodes, food intolerances and alcohol intolerance, and partial or complete paralysis.	Symptoms/problems which occur in M.E. include: impaired vision, nystagmus, afferent pupillary defect, loss of balance and muscle coordination, cogwheel movement of the legs, slurred speech, difficulty speaking (scanning speech and slow hesitant speech), difficulty writing, difficulty swallowing, proprioceptive dysfunction, abnormal sensations (numbness, pins and needles), shortness of breath, headaches, itching, rashes, hair loss, seizures, tremors, muscular twitching or fasciculation, abnormal gait, stiffness, subnormal temperature, sensitivities to common chemicals, sleeping disorders, facial pallor, bladder and bowel problems, difficulty walking, pain, tachycardia, stroke-like episodes, food intolerances and alcohol intolerance, and partial or complete paralysis.
MS can cause orthostatic intolerance (dizziness or faintness on standing).	M.E. commonly causes severe orthostatic intolerance (which often worsens to become severe POTS and/or NMH).
Short-term memory loss, word finding difficulty, difficulty with concentration and reasoning and other forms of cognitive impairment occur in 50% of MS patients. 10% of MS patients have cognitive impairments severe enough to significantly affect daily life.	Short-term memory loss, word finding difficulty, difficulty with concentration and reasoning and other forms of cognitive impairment occur in 100% of M.E. patients. Almost all M.E. patients have cognitive impairments severe enough to significantly affect daily life.
MS patients often become severely more ill in even mildly warm weather. Cold weather can also cause significant problems.	M.E. patients often become severely more ill in even mildly warm weather. Cold weather can also cause significant problems.
MS can affect autonomic nervous system function (including involuntary functions such as digestion and heart rhythms).	M.E. can affect autonomic nervous system function (including involuntary functions such as digestion and heart rhythms).
MS is thought to cause a breakdown of the blood brain barrier.	M.E. is thought to cause a breakdown of the blood brain barrier.
A positive Babinski's reflex is consistent with several neurological conditions, including MS. (Babinski's reflex or extensor plantar reflex is a test for dysfunction of the corticospinal tract.)	A positive Babinski's reflex (or extensor plantar reflex) is consistent with M.E.
The Romberg test will often be abnormal in MS. (This test measures neurological or inner ear dysfunction.)	The Romberg test will be abnormal in 95% or more of M.E. patients.
An abnormal neurological exam is usual in MS. Abnormalities are also commonly seen in neuropsychological testing in MS.	An abnormal neurological exam is usual in M.E. Abnormalities are also commonly seen in neuropsychological testing in M.E.
MS causes a certain type of brain lesion detectable in MRI brain scans. Abnormalities are also seen in EEG and QEEG brain maps and SPECT brain scans in MS.	M.E. causes a certain type of brain lesion detectable in MRI brain scans. Abnormalities are also seen in EEG and QEEG brain maps and SPECT brain scans in M.E.
Hypothyroidism is found in many MS patients.	Hypothyroidism is found in almost all M.E. patients.
The glucose tolerance test is often abnormal in MS.	The glucose tolerance test is often abnormal in M.E.
Low blood pressure readings (usually low-normal) are common in MS.	Low blood pressure readings are extremely common in M.E. Severely low blood pressure readings as low as, or lower than, 84/48 (or 75/35 according to many anecdotal accounts) are common in severe M.E. or those having severe relapses. This can occur at rest or as a result of orthostatic or physical overexertion. At times BP readings can be so low that they cannot be measured by the machine and error messages appear. Circulating blood volume measurements of only 50% to 75% of expected are also commonly seen in M.E.
Some MS patients experience a partial remission during pregnancy.	Some M.E. patients experience a partial remission during pregnancy.
Patients with MS have an increased risk of dying from heart disease or vascular diseases.	Deaths from cardiac problems are one of the most common causes of death in M.E.
Although MS is primarily neurological, it also has aspects of autoimmune disease.	Although M.E. is primarily neurological, it also has aspects of autoimmune disease.
MS usually affects people between the ages of 20 and 40 years, and the average age of onset is approximately 34 years. Onset occurs between the ages of 20 to 40 years in 70% of patients.	The average ages affected by M.E. are similar to those seen in MS. However, the average age of onset may be significantly younger in M.E.
MS was once thought to be rare in children, but we know that around 5% of MS sufferers are under 18.	Around 10% of M.E. sufferers are under 18.
MS affects more than a million adults and children worldwide.	M.E. affects more than a million adults and children worldwide. (M.E. is at least as common as MS, and may be up to twice or three-times as common.)

 

	M.E. always causes significant vascular and cardiac problems. M.E. causes cardiac insufficiency, and reduced circulating blood volume; circulating blood volumes as low as 50% have been documented in M.E. This is often accompanied by problems of orthostatic intolerance including often severe postural orthostatic tachycardia syndrome (POTS) and Raynaud’s phenomenon. Heart rates can be as high as, or higher than, 150 bpm after even short periods of maintaining an upright posture.
	The diagnosis of M.E. should never be made without the post-exertional paralytic muscle weakness (affecting all muscles and organs, including the brain and the heart) which is unique to M.E. being present. Muscles may function normally to begin with but there is a continued loss of post-exertional muscle power after even a minor degree of physical effort; three, four or five days, or longer, will elapse before full muscle power is restored.
MS is associated with a reduced cancer risk.	M.E. is associated with an increased cancer risk.
The cause of MS is hotly debated and there is a lack of consensus.	M.E. occurs in outbreaks and it is definitively known to be caused by a virus; a virus with a 4 – 7 day incubation period. There is also overwhelming evidence to suggest that M.E. is caused by an enterovirus; the same type of virus which causes polio.
On average, multiple sclerosis shortens the lives of affected women by about 6 years, and men by 11 years.	M.E. may reduce life span by 25 years on average.

Fatigue is only a minor symptom in M.E. and it is not experienced by all M.E. patients. More concerning in M.E. are severe and disabling cardiac, neurological, cognitive and metabolic problems.

 

The amount of rest a person with M.E. gets, and their level of exertion, has an enormous effect on their short term and long term well-being. The effects from severe overexertion on one day or week can still be having severe effects on the patient many months or even years later.

 

Patients with M.E. must be given access to the appropriate care and support as soon as possible after becoming ill. Access to the appropriate care has an enormous impact on the course of the disease in M.E.; many severely affected M.E. patients would not have become severely affected had they been given the correct care and support when they were first ill.

 

Death can and does occur in M.E. due to even low levels of physical or orthostatic overexertion.

 

M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.

M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) – and an associated injury of the immune system – by the chronic effects of a viral infection. There is also transient and/or permanent damage to many other organs and bodily systems (and so on) in M.E. M.E. affects the body systemically. Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or months or longer. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E.

M.E. is not stable from one hour, day, week or month to the next. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E.