LindaJoy Posted November 4, 2008 Report Share Posted November 4, 2008 I've been on the computer again. Anyone ever hear of myalgia encephalomyolitus (ME)? Some websites include it with CFS, while others (a Hummingbird site) shows it to be a separate entity. I sound so much like this disorder that no one here at the U of M hospital has ever heard of.Anyone here ever consider it? Anyone's doctors ever mentiion it? What do you know about it?thanks.Linda Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted November 4, 2008 Report Share Posted November 4, 2008 Hi,I have always heard it used as another word for CFS and I think it is the term used more outside the US. Is there a distiction? Not sure? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 4, 2008 Report Share Posted November 4, 2008 It is a synonym for chronic fatigue and was created in order to indicate that there is physiological cause to CFS, not anxiety or depression as a primary cause which is what many lay people and doctors tend to believe. I was still diagnosed with CFS as my main issue when the ME name arrived on the scene... in the 80's or early 90's maybe?Nina Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 4, 2008 Report Share Posted November 4, 2008 I think the term ME is used mostly in the UK. I remember searching the internet when my son was so ill and I stubbled across that. It fit him perfectly too. BTW, he was ultimately DXed with NMH: an autonomic neuropathy of his small intestines; and CFS. What are your symptoms now Linda Joy?Julie Quote Link to comment Share on other sites More sharing options...
flop Posted November 5, 2008 Report Share Posted November 5, 2008 Myalgic Encephalomyelitis (or ME) is an alternative term for Chronic Fatigue Syndrome (CFS) and Chronic Fatigue Immunodeficiency Syndrome (CFIDS) - all three are used to describe the same condition. In the UK, ME was the term mostly used but now doctors don't use ME. That is because ME translated to "muscle pain with inflammation of the brain" and it had been scientifically shown that this illness does not involve brain inflammation so the term is a misnomer.There certainly is a link between CFS (or the other names) and POTS. There was a medical study done where they took a group of CFS patients and did tilt tests on them - I think that 40% of the CFS patients tested positive for POTS. It was shown that treating the POTS could improve CFS symptoms for some people. (sorry I can't remember the research exactly).There is a doctor in Newcastle (UK) who is doing lots of research with CFS/POTS patients. The dr says that fatigue is a major symptom of POTS, I know it is a big problem for me.Flop Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 5, 2008 Report Share Posted November 5, 2008 My son's pediatrician, Dr. Peter Rowe carried out the study you speak of, Flop. I'm pretty sure that 90% of the CFS patients had NMH/POTS, a very high percentage. I can round up a link to the study if anyone's interested. Hope you're doing better, Linda Joy. Fill us in when you get a chance.Julie Quote Link to comment Share on other sites More sharing options...
flop Posted November 5, 2008 Report Share Posted November 5, 2008 I've tracked down where I read about that POTS/CFS study. It is mentioned by Dr Grubb in his book "Syncope: mechanisms and management". He reports Dr Rowe's florinef study and that from 171 CFS patients that 36 of them met the criteria for POTS in the first 10 minutes of tilt testing.Flop Quote Link to comment Share on other sites More sharing options...
ana_22 Posted November 5, 2008 Report Share Posted November 5, 2008 I was just about to post something on this Linda Joy!!!!!I have been doing a lot of research as my dr now thinks this could be by diagnosis...ME is not what most people refer to as chronic fatigue syndrome. It is so much more than chronic fatigue. I haven't got my head around everything yet but i do think it has something to do with your body not being able to fight off a virus that then manifests into ME (not sure about that though). What i do know is that is diagnosable through TESTS and it is not really a diagnosis of exclusion. The SPECT MRI and vEEG are the best tests, there are some blood tests that you can do prior to these that can kinda put you on the right track. Im seeing my DR next week and we are going to go through some of the tests and see what we can do.I have already been diagnosed with POTS and it is true something like 95% with ME have POTS and most are orthostatic intolerant.The reason why i think its so important to test for ME is that research has shown people with ME need to REST and that exercise harms and exacerbates the condition making it worse and the chance for recovery much slimmer than it already is. When i was diagnosed with POTS, the DR that diagnosed me said i should try and exercise as much as i can. So it makes it quite a tough situation, i don't want to exercise and ruin my chances of recovery if it is primary ME. But i don't not want to exercise and ruin my chances of recovery if it is POTS cause deconditioning makes POTS worse. Also apparently ME is acute, which my POTS onset kinda was ( a month of lower back pain and nausea and then wham 6 months bed for me!!! and still mostly in bed)www.ahummingbirdsguide.com is an excellent source of information about ALL things ME.Just wondering has anyone had a SPECT mri of the brain, i think they may be called MRA or something? I would love to hear what others think once having a look through the site!!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 5, 2008 Report Share Posted November 5, 2008 I think as time goes on we will find that many people who were diagnosed with CFS were diagnosed that way because their doctor didnt even know what POTS/Dysautonomia was... I was originally but it was just a term the doctor gave me to get me out of the door. But im a persistant kinda guy... Quote Link to comment Share on other sites More sharing options...
flop Posted November 5, 2008 Report Share Posted November 5, 2008 One thing is certain - CFS/ME is a genuine medical illness and is NOT a psychological or psychosomatic problem. CFS is not a diagnosis of exclusion, in the UK the diagnostic criteria contain exclusions because they want all doctors to ensure that other medical diagnoses have not been missed. I have severe, unrelenting fatigue that is worsened by exertion as one of my symptoms however I do not fit the criteria for CFS as I don't have the other symptoms. My doctors say that my fatigue is simply a component of my POTS.There is a lot of confusion regarding CFS and/or ME. There are lots of different medical opinions regarding these diagnoses which makes getting information much harder. I would advise people to read different sources of information and realise that not everything written on the internet is correct or accurate. The hummingbird site does have a lot of information but it presents only one extreme of a spectrum of opinion. It is certain that more research is needed so that anyone suffering with these condition(s) can get the best treatment possible.Flop Quote Link to comment Share on other sites More sharing options...
pat57 Posted November 6, 2008 Report Share Posted November 6, 2008 ana 22,SPECT and MRI are 2 different things. I have had both - the Dr. was looking for a seizure foci. Quote Link to comment Share on other sites More sharing options...
flop Posted November 6, 2008 Report Share Posted November 6, 2008 MRI = Magnetic Resonance Imaging (uses a huge magnet, machine is noisy!)MRA = Magnetic Resonance Angiogram (like MRI but with a "contrast"/dye injected into a vein to show up the blood vessels)SPECT = Single Photon Emission Computed Tomography (a radioactive substance is injected into a vein and the scan shows how much has got into the tissues - ie tissue perfusion) Quote Link to comment Share on other sites More sharing options...
ana_22 Posted November 6, 2008 Report Share Posted November 6, 2008 yeah not sure i just know that Dr Byron Hyde and his team have done alot of study into it and it is def diagnosable with SPECT. (i should really ask my sister the technical differences, shes a radiographer!!) This is DR Hydes sitehttp://www.nightingale.ca/out of interest, has anyone read any of his stuff and what do you think? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 6, 2008 Report Share Posted November 6, 2008 'CFS is not a diagnosis of exclusion, in the UK the diagnostic criteria contain exclusions because they want all doctors to ensure that other medical diagnoses have not been missed'try telling that to the average GP in Australia... Quote Link to comment Share on other sites More sharing options...
Maxine Posted November 6, 2008 Report Share Posted November 6, 2008 NOTE:With MRA you don't necessarily have to have dye injected. I didn't, and this scan showed my brain vascular system quite clearly. Even the MRA that was done poorly--- I had two done-----one done in 2005, and one in 2008 at the EDS study at NIH.On the first one the doctor reported "exquisite" anatomy------meaning perfect! Imagine my shock when the doctor heading the NIH study said my left vertebral artery was missing, and my left cerebral had fetal origin---(meaning they never developed). It's good to get more then one opinion. I don't know how the radiologist from 2005 missed this. Even I could see this when I put the MRA CD in my computer.I didn't know ME could be diagnosed with an MRA, but then again, I haven't delved into researching ME. I have to admit I'm a bit of a nerd, and find a lot of this stuff very interesting. Science & health was my forte in school. Maxine :0) Quote Link to comment Share on other sites More sharing options...
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