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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Is this even the right place for me ?

Discussion in 'General Treatment' started by SaveMe, Apr 18, 2011.

  1. SaveMe

    SaveMe *****

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    i feel that i dont belong because i might have something else.....
    1. Near Death feelings
    Episodes of feelings that im approaching death--horrible malaise/bad flu (night)2. body pains

    3. Headaches

    4. sluggish mind

    5. Excessive mucus in my throat that I spit up
    Viscous saliva all the time, chronic throat-clearing.

    6 Alot of weight loss

    7 Sunlight (Photophobia) & Noise sensitivity (irritability)

    8. Loss of strength

    10. cold hands and feet

    11. Cartilage grinding
    Crackle & popping sound in neck

    12 Feeling feverish, but never truly having a fever
    13 dry mouth


    not sure about PEM to be honest. I never pushed it hard enough to find out. but i dont feel "refreshed after exercise" thats for sure. I just need to listen to my body more and record any PEM experiences.
     
  2. liquid sky

    liquid sky Senior Member

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    Have you ever been tested for Lyme Disease. It has very similar symptoms to those you mentioned also.
     
  3. Tulip

    Tulip Guest

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    It could be anything if it's not ME/CFS.

    Post viral syndrome
    HIV
    Thyroid dysfunction
    Lupus

    The list goes on. You need to see someone that will do a thorough investigation, including an mri/spect scan and full bloods (including all the unusual tests).
     
  4. Esther12

    Esther12 Senior Member

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    Sounds like a lot of my symptoms actually. I had the throat clearing thing badly as a child, and it's got worse again recently... seems to be related to excessive dairy for me. Not really sure.

    ME/CFS seems like it can include all sorts of things. No-one belongs here imo, but lots of us are stuck here.
     
  5. Tulip

    Tulip Guest

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    Not quite true, ME is a clear cut diagnosis and an actual disease, not a syndrome. Therefore quite a few of us do belong here :)
     
  6. SaveMe

    SaveMe *****

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    the city
    and I thought post viral fatigue syndrome was synonymous with CFS.

    i think Ester is right though, our symptoms vary so greatly that there appears to be subsets/subtypes.
     
  7. lizw118

    lizw118 Senior Member

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    These are the same symptoms that I have, except no feverish feeling now. I only had a fever in the initial onset of the symptoms/illness, which was 15 years ago. I also have very little PEM and have wondered if I have lyme or something. Otherwise many of my biomarkers are the same as people here (gut problems, methylation problems, etc)
    Liz
     
  8. WillowJ

    WillowJ Senior Member

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    WA, USA
    ME/CFS is a specific disease or set of closely related diseases like Tulip said.

    Like Esther said, we're stuck here regardless of what we have because we aren't being taken seriously by medical doctors and aren't getting the medical assessments we need. That's why everyone is welcome here regardless of whether they have PEM. We're all being treated badly and this is a great place to get support and suggestions. Just know that the ME/CFS-specific advice doesn't apply to you if you don't have PEM. But some pathologies do overlap with other conditions like Lyme and Fibro, so some of the suggestions will still be useful.

    There's also a forum at wrongdiagnosis where people might have more diverse expertise if you need suggestions you can't get here.
     
  9. rlc

    rlc Senior Member

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    Hi SaveMe, you really need to get properly investigated to find out whats wrong with you and it sounds like your getting bad treatment from your doctors and it hasnt been done! Having the symptoms found in the CFS diagnostic criteria doesnt mean you have CFS, you could have a large number of other conditions all of which need to be ruled out!!!!!!

    I read a post of yours that said you have low blood preasure you wont find this in any of the CFS criteria which makes me strongly suspect somethings been missed!

    However I see that youre in New York, if you can, try and get to see this doctor Shirwan a Mirza to the best of my knowledge he can be contacted at

    Endocrinology Diabetes Metblism
    399 Grant Avenue Road Suite 1
    Auburn, NY, 13021
    Phone Number:
    (315) 253-2669
    Or 37 W Garden St Ste 205 Auburn, NY 13021 ph 315-253-2669 37

    He also works at Auburn memorial Hospital where he is The Clinical Assistant Professor of Medicine http://www.auburnhospital.org/physicians/alphabetical/alpha_m.html

    Dr Mirza is not a CFS doctor he is an Endochrinologist and one of the Elite doctors in the US, he is involved in a lot of cutting edge research and has written several indebt articles about how he finds what is really wrong with people given a CFS diagnosis which he achieves by taking them seriously and investigating them for all the conditions that other doctors often arent even aware of! In his articles he writes thing like patients should get at least a thorough listening (without interruption) and a complete clinical evaluation to put their complaints into context.

    If we are too lazy to do the right evaluation, more of our patients come to us with "unexplained symptoms" and it would be convenient to label them with depression, chronic fatigue syndrome, and similar "empty" diagnoses

    . It pains me to see the concept of Chronic Fatigue Syndrome (CFS) promoted by individuals and organizations alike, including a prestigious US Government Agency such as CDC (Center for Disease Control). I do not recall using CFS as a diagnosis. The reason is simple, I go beyond the CDC criteria in investigating chronic fatigue. In their 10-minute consultation "Tiredness", Drs Moncrieff and Fletcher jump to a speedy conclusion that the patient under discussion has depression. That is exactly what patients dislike about our diagnostic acumen, attributing major symptoms in their life to mental diseases without first exhausting all the underlying physical ailments.

    If something has been missed Id say hed be your best bet for getting a correct diagnosis, if you have ME which is not CFS! You still need to be properly examined because ME patient often have other medical problems, and because hes a normal doctor not one of those so called CFS expert doctors who charge insane amounts of money and dont cure people Id imagine his prices arent too bad.

    If you scroll down these pages you will find articles by him that give an idea of his quality and how far ahead of most doctors he is.

    A Judicious Evaluation of unexplained symptoms by Shirwan A mirza http://www.bmj.com/content/336/7653/1124.extract/reply

    In these two articles he rips the recent CDC and NICE CFS guidelines to shreds and shows them as the recipes for misdiagnosis that they are!

    The myth of chronic fatigue syndrome by Shirwan A Mirza http://www.bmj.com/content/334/7605/1221.extract/reply

    NICE and CDC miss the boat by Dr Shirwan A Mirza http://www.bmj.com/content/335/7617/446.extract/reply

    Just to give more idea of Dr Mirzas quality in these next three articles he points out the mistakes that almost all doctors make when investigating the thyroid, celiac and vitamin D

    Unveiling the mysteries of the thyroid http://www.bmj.com/content/337/bmj.a801.short/reply

    Celiac the great imitator http://www.bmj.com/content/338/bmj.a3058.short/reply

    Vitamin D Deficiency http://www.bmj.com/content/336/7657/1318.extract/reply

    The only other doctor I know of who takes CFS patients seriously and extensively investigates them for missed diseases is Dr Byron Hyde but hes in Canada and has several year waiting lists.

    Hope this helps, dont let useless doctors get you down

    All the best
     
  10. richvank

    richvank Senior Member

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    Hi, Ric.

    I'm guessing that you meant to write "low blood pressure." I'm sorry, but I have to disagree with you. Low blood pressure is very common in CFS.

    The ME/CFS case definitions do not include all the symptoms that are experienced in this disorder. I think they have been written in an attempt to include those
    that are most diagnostic. Another example is gastrointestinal problems. These are very common in ME/CFS, but don't get much attention in the
    case definitions. I've seen lists of 60 or more different symptoms that various people have reported in ME/CFS, but they aren't all included in the formal case definitions.

    Best regards,

    Rich
     
  11. insearchof

    insearchof Senior Member

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    Have enteroviral infection considered



    From the Enterovirus Foundation (and copied across from another thread at PR)



    Symptoms Commonly Seen for Persistent NonPolio Enteroviral Infections

    Listed here are common symptoms of persistent non-polio enteroviral infection. This list is from observations made by Dr. John Chia in his Infectious Disease Medical Practice in Torrence, CA.

    Respiratory and/or gastrointestinal symptoms or just flu-like symptoms (fevers, body ache, headache etc.). Few virus infections present with both respiratory and GI symptoms.
    Upper respiratory tract symptoms such as runny and stuffy nose, sinus congestion and pain, sore throat, ear pain, difficulty in swallowing, loss of smell or taste.
    Upper and lower gastrointestinal symptoms such as nausea, indigestion, reflux, abdominal bloating, upper and lower abdominal pain, cramps, constipation alternating with diarrhea.
    Sudden weight loss due to significant stomach problem or decreased caloric intake, or weight gain due to inactivity.
    Numbness in the limbs, muscle twitching and spasms. Some experience facial tingling and numbness.
    Many types of headaches.
    Bone, muscle, and/or joint pain. Foot pain is quite common.
    Chest pain, palpitations and tightness
    Cough, shortness of breath, wheezing
    Low blood pressure
    Heart arrhythmia (irregular heartbeat) or tachycardia (rapid heartbeat)
    Intermittent low grade fever, chills and night sweats.
    Reproductive irregularities and pain.
    Prostate issues and pelvic pain.
    Blurred vision.
    Herpangina (blisters or ulcers over the roof of the mouth). Ulcers may form in the mouth, throat and for females the vaginal/cervix area.
    Recurring yeast or bacterial infections due to a weak immune system.
    Adrenal surge or dysfunction. High cortisol levels or low cortisol levels.
    Psychological problems, anxiety, or depression.
    Mental fatigue when trying to concentrate on tasks. Cognitive issues are very common as are short-term memory problems.
    Sleep disturbance.
    Seizures are rare but do occur.
    Vitamin and mineral deficiencies. Many become anemic.
    Swollen Lymph nodes in the neck and in the armpits
    Rash
    Organs that can be affected by enteroviruses: heart, pancreas, lungs, liver, spleen, colon, ovaries, testicles, epididymis, thyroid, muscles, skin and the central nervous system.
    Enteroviral infections can trigger dormant viruses to reactivate, such as HHV6, Epstein Barr Virus, CMV, and chickenpox all herpes viruses.
    Children can show symptoms, but parents may not recognize them especially if they are intermittent.
    Children can have many of the same adult symptoms a flu-like illness, fever, mouth ulcers, abdominal pain, loss of appetite, a rash, headaches, leg pain and weakness, muscle twitching, reflux, cognitive dysfunction and perhaps heart pain and arrhythmias. A diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis in children is possible after three months of illness.
    An enteroviral infection should be suspected if the same symptoms recur every month.
     

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