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(New) Myalgic Encephalomyelitis entry On N.O.R.D site

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/#.VxVOgS9t86U.twitter

This was written in consultation with Leonard Jason and is quite good.

Would have been nice to see some specific info for symptomatic treatments at least (ie for POTS, sleep, pain etc) , as well as maybe suggestions for specific tests like tilt-table/standing test, but quite good overall ...and contains no CBT/GET nonsense :thumbsup:


Excerpt:
Synonyms of Myalgic Encephalomyelitis
  • CFS/ME
  • chronic fatigue syndrome/myalgic encephalomyelitis
  • ME
General Discussion
Summary
Myalgic encephalomyelitis (ME) is an acquired complex disorder characterized by a variety of symptoms and physical findings potentially affecting multiple systems of the body. Many cases are preceded by a viral infection, usually a flu-like or upper respiratory illness, although ME can also be preceded by a non-viral illness or other trauma such as chemical exposure. Onset is usually rapid (acute) but gradual onsets are also reported. Affected individuals do not recover from the infection and instead experience a wide variety of symptoms including an inability to produce sufficient energy to meet daily demands. Marked fatigue and weakness, sickness, cognitive dysfunction and symptom flare-up follows physical and cognitive exertion. Additional symptoms that may occur include headaches, pain, muscle weakness, neck pain, vision abnormalities (such as blurred vision), a sensation of tingling, burning or numbness of the extremities (paresthesia), bladder and bowel dysfunction, and sleep dysfunction. Cardiovascular abnormalities have also been reported. Myalgic encephalomyelitis is a chronic and disabling disorder. Severe cases often leave affected individuals bedridden or housebound. Myalgic encephalomyelitis may occur as an outbreak that affects a large group of people (epidemically) or may only affect an individual (non-epidemically).

Introduction
There is significant controversy and debate in the medical literature about the relationship between myalgic encephalomyelitis and chronic fatigue syndrome (CFS). The first outbreak of myalgic encephalomyelitis was in 1934 and the term myalgic encephalomyelitis first appeared in the medical literature in 1956. Myalgic encephalomyelitis is recognized as a distinct disorder and has been classified as a specific neurological disorder by the World Health Organization (WHO) since 1969.

The term CFS was first used in the medical literature during the 1980s in the United States. The criteria focused more on fatigue than the encephalitic (inflammation of the brain) features of the disorder. This was unfortunate, since there is more than sufficient robust evidence which illustrates the underlying biological process involving the central nervous system, immune system, energy metabolism and stress system. Consequently, the emphasis on fatigue unfortunately led to defining the disorder being seen as a psychiatric illness. Because little was known about the cause or physiology of CFS, a wide range of patients were diagnosed with CFS even though they may have had a variety of conditions and experienced different symptoms. CFS eventually evolved into a larger disease designation that overlapped with myalgic encephalomyelitis. Consequently, some researchers, patients, government organizations, and other organizations began to use the terms interchangeably or with the combined acronym ME/CFS, creating a broad disease category...
 

Justin30

Senior Member
Messages
1,065
http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/#.VxVOgS9t86U.twitter

This was written in consultation with Leonard Jason and is quite good.

Would have been nice to see some specific info for symptomatic treatments at least (ie for POTS, sleep, pain etc) , as well as maybe suggestions for specific tests like tilt-table/standing test, but quite good overall ...and contains no CBT/GET nonsense :thumbsup:


Excerpt:

Hey,

Just a thought and it maybe worth an email to rare diseaes and Leonard Jason on the POTS, Sleep and Pain issues you brought up.

My experience with some groups, Drs and researchers has been positive when emailed. They responded and would look into it and/or would give me reason as to why they wrote down what they did.

I hope someone takes the time to pursue this so that Dyautonomia is included as part of this as it is a Hallmark Feature of ME and Autonomic Failure.

Thanks for posting
 

Denise

Senior Member
Messages
1,095
I hope someone takes the time to pursue this so that Dyautonomia is included as part of this as it is a Hallmark Feature of ME and Autonomic Failure.

fwiw - Dr. Jason has indicated (in a couple of articles I believe) that he doesn't find dysautonomia/POTS/OI to be as prevalent as others find it to be.

Edit to clarify - @Valentijn is correct that I shouldn't lump dysautonomia/POTS/OI together though Dr. Rowe seems to view POTS as a subgroup of OI (http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf) and others view POTS as a subgroup of dysautonomia (http://www.dysautonomiainternational.org/page.php?ID=34).
 
Last edited:

Valentijn

Senior Member
Messages
15,786
fwiw - Dr. Jason has indicated (in a couple of articles I believe) that he doesn't find dysautonomia/POTS/OI to be as prevalent as others find it to be.
Which one is it? They're all different entities, with different testing procedures and variations in symptoms. Testing for POTS will miss every other form of OI, and will show low incidence in ME patients if other research showing higher incidence of non-POTS OI is to be believed.
 

Justin30

Senior Member
Messages
1,065
fwiw - Dr. Jason has indicated (in a couple of articles I believe) that he doesn't find dysautonomia/POTS/OI to be as prevalent as others find it to be.

Edit to clarify - @Valentijn is correct that I shouldn't lump dysautonomia/POTS/OI together though Dr. Rowe seems to view POTS as a subgroup of OI (http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf) and others view POTS as a subgroup of dysautonomia (http://www.dysautonomiainternational.org/page.php?ID=34).

Can you please send me a link to Leonard Jason where he states this I would like to read more on him?

I just dont understand why the CCC Criteria would give it its own subgrouping....not to mention if you have POTS or NMH...then if you have POTS or NMH then you could add 15 symptoms give or take that overlapp with ME. Not to mention that whole subcategory in the CCC document.

At Least One Symptom from Two of the Following Categories:
a. Autonomic Manifestations: orthostatic intolerance–neurally me-
diated hypotenstion (NMH), postural orthostatic tachycardia
syndrome (POTS), delayed postural hypotension; light-headed-
ness; extreme pallor; nausea and irritable bowel syndrome; uri-
nary frequency and bladder dysfunction; palpitations with or
without cardiac arrhythmias;

This just goes to show how badly we need research so that people get help.
 

BurnA

Senior Member
Messages
2,087
http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/#.VxVOgS9t86U.twitter

This was written in consultation with Leonard Jason and is quite good.

Would have been nice to see some specific info for symptomatic treatments at least (ie for POTS, sleep, pain etc) , as well as maybe suggestions for specific tests like tilt-table/standing test, but quite good overall ...and contains no CBT/GET nonsense :thumbsup:


Excerpt:

This is a very good article.

I wouldn't get hung up about treatments or Tilt table testing - he is quite clear:
There is no cure for ME. Treatment is aimed at relieving symptoms and preventing a worsening of symptoms.

Affected individuals may also undergo tests to identify or evaluate associated symptoms, including sleep evaluation studies and tests that evaluate cardiac, gastrointestinal, muscle, endocrine, or vascular function.

Individuals with ME are at risk for cardiovascular symptoms. Affected individuals may experience palpitations with or without irregular heartbeats (arrhythmias), low blood pressure (neurally mediated hypotension), and postural orthostatic tachycardia syndrome (POTS). POTS is a condition characterized by an abnormal increase in the heart rate upon standing. Affected individuals may faint or become dizzy upon standing.

Of course the best bit is
Avoiding overexertion is extremely important in maintaining health in affected individuals

and not a whiff of CBT / GET :thumbsup: