ME or CFS, what do you call it?

[VeganMonkey]

(I have posted this on another forum as well)

I read in another forum that some people don't like the name CFS.

Quote from wiki:

Myalgic encephalomyelitis (ME) means "inflammation of the brain and spinal cord with muscle pain." ME is used in the current ICD10 classification system of the World Health Organization as a subheading under Brain Disorders - post-viral fatigue syndrome. A review from 2001 noted a report that indicates ME is a distinct condition from CFS, but CFS and ME are usually used as synonyms.[12]
The term "myalgic encephalomyelitis" is controversial as CFS has not been associated with any pathology of the muscles or central nervous system.[13][14] For this reason, in 1996 the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in the United Kingdom recommended use of the name chronic fatigue syndrome instead of myalgic encephalomyelitis.[13][15] A letter to the editor in The Lancet explained the 1996 report received some acceptance, but also harsh criticism from patients and physicians who said their views had been excluded.[16] Accordingly, the Working Party on CFS/ME that reported recommendations for the medical condition to the CMO in 2002,[17] used both names in an attempt to reach out to patient groups and acknowledge the lack of consensus among professionals and patients on the name.[16] The report declined to recommend one term over the other and preferred the compromise term ‘CFS/ME’.[18]
Many patients, and some doctors, especially in the United Kingdom, prefer to use ME on its own or in conjunction with CFS (ME/CFS or CFS/ME) because they believe it implies a more serious illness than the term chronic fatigue syndrome which focuses simply on fatigue.[18] Margaret Williams, writing for the British chairty MEactionUK, stated that the term "ME/CFS" was preferred because it more directly addressed a specific medical condition, while CFS/ME implied and placed emphasis on a condition of general fatigue.[19] Some patient groups prefer the name myalgic encephalopathy as a synonym as this does not imply inflammation but simply an illness of the nervous system. The name myalgic encephalopathy has also been evaluated as being perceived as a more serious sounding illness than chronic fatigue syndrome by research outside of the UK.[20]

I have always called it CFS as in my case I didn't develop my illness after a viral infection, but slowly over time since the age of 7 and started getting real trouble at 11. And from there is went down and down over many years.

I guess that a lot of people with the same symptoms who have ME/CFS could in fact have different illnesses of which the cause hasn't been found yet. I suspect for me it comes from POTS and maybe EDS. that's why I rather don't call it ME in my case.

Curious about other people's opinions

 

[Ember]

Curious about other people's opinions

ME and CFS have different case definitions. The International Consensus Primer recommends that "patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfil the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

 

[Allyson]

The international consensuc document of 2011 changed the official name to ME
CFS has very pperjorative overtones and comes nowehre near to dexcribing the breadth or severit of any symptoms

Many docs react negatively to CFS

They all LOVE EDS though...same symptoms for many of us,, different name makes all the difference

 

[Ember]

The international consensuc document of 2011 changed the official name to ME

The ICC doesn't change any other published definition. Its scope “is limited to criteria of ME and their application.” It recommends instead that “individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

The ICP further clarifies the ICC's separation of ME from CFS:

Remove patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, bur rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.

 

[VeganMonkey]

I must have been lucky to have bumped into many doctors that were serious about my illness. Not so much in the country where I lived before but I heard things are changing for the better there.

 

[Seven7]

ME: I have lessions in brain and PEM.

 

[MishMash]

The international consensuc document of 2011 changed the official name to ME
CFS has very pperjorative overtones and comes nowehre near to dexcribing the breadth or severit of any symptoms

Many docs react negatively to CFS

They all LOVE EDS though...same symptoms for many of us,, different name makes all the difference

Ally,
Thanks for keeping this critical topic alive with your posts. There is literally a hair's breadth difference between the symptoms of EDS and CFS. SO MANY CFSers have some form of connective tissue weakness, it is astounding.

I found a post on the EDS support website, and I am copying the author's work without disclosing her identity. She carefully addresses the incredible similarities between the two conditions. As Forrest Gump said, CFS and EDS "go together like peas and carrots" (I loved that movie):

Fatigue is frequently a part of EDS.

Here are some resources for you:

"Do some EDS patients suffer with sleep problems? " http://www.ednf.org/index.php?option=com_content&task=view&id=1269&Itemid=8 8888988

"Sleep Disturbance in Ehlers-Danlos Syndromes: Related to Chronic Pain or an Independent Entity?" http://www.ednf.org/index.php?option=com_content&task=view&id=1317&Itemid=8 8888988

"Chronic Fatigue Often Paired With Ehlers-Danlos Syndrome" http://www.ednf.org/index.php?option=com_content&task=view&id=1245&Itemid=8 8888988

And the last two are the handouts from last year's conference: "Chronic Fatigue in EDS" http://www.ednf.org/images/2011conference/Handouts/EDNF_2011_Rowe_Handout.p df and "Sleep Disorders in Hypermobility Syndromes" http://www.ednf.org/images/2011conference/Handouts/Pocinki_EDNF2011.pdf
CSF Ehlers-Danlos Syndrome Colloquium-Dr. Alan Pocinki http://vimeo.com/35766364
Fatigue is a frequent and clinically relevant problem in EDS (Voermans NC, et al. Semin Arth Rheum 2010; 40:267-74)
• 273 patients with EDS
• 77% severe fatigue
• 57% reported fatigue as 1 of their 3 most important symptoms
• Severe fatigue was more common in hypermobile than classical EDS (84% vs. 69%; P=.032)
• Fatigue had a greater impact on daily function than did painChronic fatigue is either a byproduct of or part of hypermobility. For the most recent, see Dr. Rowe's conference presentation, "Chronic Fatigue in EDS" — download from http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=8 8889219

"Chronic Fatigue Often Paired With Ehlers-Danlos Syndrome"
http://www.ednf.org/index.php?option=com_content&task=view&id=1245&Itemid=8 8889208

"Fatigue is associated with muscle weakness in Ehlers-Danlos syndrome: an explorative study"
http://www.ednf.org/index.php?option=com_content&task=view&id=1989&Itemid=8 8889064

"Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome."
http://www.ncbi.nlm.nih.gov/pubmed/10518084

"Ehlers-Danlos syndrome, diffuse pain and chronic fatigue"
http://doctorstevesbanjo.com/ehlersdanlos-syndrome-diffuse-pain-chronic-fat igue/

"Severe fatigue afflicts 75% of those with EDS" http://doctorstevesbanjo.com/severe-fatigue-afflicts-those-ehlersdanlos-syn drome/

Symptoms Of Orthostatic Intolerance: Lightheadedness, Dyspnea, Syncope, Chest Discomfort, Diminished concentration, Palpitations, Headache, Tremulousness, Blurred vision, Anxiety, Fatigue, Nausea, Exercise intolerance, Nocturia
Working hypothesis: Connective tissue laxity in blood vessels allows increased vascular compliance, promotes excessive pooling during upright posture, leading to diminished blood return to the heart, and thus to OI symptoms (Rowe PC, et al. J Pediatr 1999;135:494-9)
Dr. Peter Rowe's conference presentation, Chronic Fatigue in EDS (http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=8 8889219)

In other words, yes, fatigue can be a part of EDS. What you do about it depends on what's causing it. If POTS or other dysautonomia is a problem, treating it will help with fatigue. When pain is a problem, do what you can about it and that will improve your sleep. Then see where you are once those things are managed; there are psychoactive solutions for fatigue and alertness, but they should probably be the last thing considered, unless you have ADHD or other comorbid problems.

Pain 2012 http://bit.ly/J9vZ8W - Mark's wonderful article

EDNF's Pain Management Medical Resource Guide http://www.ednf.org/index.php?option=com_content&task=view&id=2123&Itemid=8 8889247

"Chronic Pain is a Manifestation of the Ehlers-Danlos Syndrome" (Sacheti et al, 1997) http://www.ednf.org/index.php?option=com_content&task=view&id=1331&Itemid=8 8889208

Dr. Howard Levy, "A Primer on Pain Medications" available from http://bit.ly/HQDNwk

 

[golden]

As another thread has taught me, neither M.E. nor C.F.S. should be used because they are both loaded with negative connotations which mean the medical profession are more likely to abuse me.

Since I was initially diagnosed with M.E. and then it was changed to C.F.S. by a Doctor who preferred that term, I have discovered patients are more vulnerable under a C.F.S. diagnoses as opposed to an M.E. diagnoses which apparently places it firmly as a physical illness although again, this is debatable.

Its a mess.

 

[Allyson]

T

Ally,
Thanks for keeping this critical topic alive with your posts. There is literally a hair's breadth difference between the symptoms of EDS and CFS. SO MANY CFSers have some form of connective tissue weakness, it is astounding.

I found a post on the EDS support website, and I am copying the author's work without disclosing her identity. She carefully addresses the incredible similarities between the two conditions. As Forrest Gump said, CFS and EDS "go together like peas and carrots" (I loved that movie):

Thanks for that Mish Mash;

Yes the symptoms all seem so similar and SO many ME/cfs/fibro people have contacted me saying they have hypermmobility, positive Gorlins' sign or both ( personally and or in the family) that I think this theory has a lot of merit.

I have contacted EDNF foundation in the past and they are always happy for their posts to be shared and re- posted - which is kind of them - as they are keen do dissiminate knowledge about these conditions. (Mark Martino is the author of many of them... thanks indeed Mark for your generosity.)

I have also copies your post from here into the main EDS thread
http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/#post-310872
in order that the 12,000 odd people who have viewed that thread can follow it too.

Thanks again,


Best,
Ally