Notes and Thoughts about ME/CFS

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, Mar 30, 2009.

  1. jasminetee

    jasminetee Member

    These are some of the notes and thoughts I've been collecting on ME/CFS. I think they are helpful for people who want to send out info to non-believers.


    >"In my experience, CFS is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages." ~ Daniel L Peterson Journal of CFS 1995

    ``My son was bed-ridden with CFS and it was six months before he could walk from his bedroom to the lounge _ I counted the steps, there were 39,’’ Mr Chambers said.

    "A chronically activated immune system as reflected by various blood tests could reflect one of two possibilities or both: the presence of a micro-organism such as a virus (or) a defect in the immune system that causes it to become unnecessarily activated."

    “Most researchers now acknowledge that the central nervous system – the brain and spinal cord – somehow plays a role in (ME)CFS”.

    “Every patient with (ME)CFS knows about overlapping conditions. FMS. IBS. MCS. TMD (which) makes diagnosis and management harder for physicians. It also complicates life for patients, who must deal with skepticism from the physicians, family members and friends who find it hard to believe that someone with so many ailments isn’t a hypochondriac, depressed, or eager to assume the sick role to get attention”.

    “In fact, research suggests that it may be rare for an (ME)CFS patient not to have concurrent symptoms of other illnesses, and some patients receive formal diagnoses for multiple conditions”.

    “A physical therapist who doesn’t understand (ME)CFS is worse than none at all”.

    “It’s somewhat ironic that for an illness where patients are often diagnosed as deconditioned and characterised as lazy, exercise exacerbates symptoms rather than relieving them. Well-meaning health care professionals often recommend aerobic exercise as a cure-all for the symptoms of (ME)CFS without fully understanding the potential consequences of their prescriptions. As anyone with (ME)CFS who has attempted to ‘get fit’ using traditional approaches to exercise knows, the results can be devastating”.

    On 18th February 1993, Dr Paul Cheney, Professor of Medicine at Capital University USA, Medical Director of the Cheney Clinic in North Carolina, and one of the world’s leading exponents on ME/CFS, testified before the FDA Scientific Advisory Committee in a testimony that has become one of the most quoted in history:

    “I have evaluated over 2,500 cases of Chronic Fatigue Syndrome. At best, it is a prolonged post-viral syndrome with slow recovery. At worst, it is a nightmare of increasing disability with both physical and neurocognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months. The most difficult thing to treat is the severe pain. Half have abnormal MRI scans. 80% have abnormal SPECT scans. 95% have abnormal cognitive-evoked EEG brain maps. Most have abnormal neurological examination. 40% have impaired cutaneous skin test responses to multiple antigens. Most have evidence of T-cell activation. 80% have evidence of an up-regulated 2-5A antiviral pathway. 80% are unable to work or attend school. We admit regularly to hospital with an inability to care for self”.


    When I read the research about CFS and FMS it makes sense to me that our brains and bodies are basically going haywire. Our hormone levels are off or non-existent, we have low blood flow and that includes to our brains, we're not utilizing Oxygen properly, our Mitochondria are malfunctioning affecting the ATP to ADP output which is how our energy is produced on a cellular level, our synapses may be misfiring and they often have the wrong levels of Dopamine and other substances, our Circadian Rhythms are off kilter affecting our sleep, our Genes in our DNA are altered with Genes like the Huntington Disease Gene being turned on, our protein replication is messed up and many of our proteins are coming out misfolded,viral pathways are constantly activated in CFS and this burns out our immune system. Cheney has proof that our hearts aren't working right, and the list goes on and on....

    It's a wonder we can function at all.

    It's a sad state of affairs I know. We are suffering from a disease that is extremely devastating in the severe stages and that's still not being acknowledged by the medical profession or the media. If it were then everyone would understand why so many things are going wrong with our bodies and our minds.

    [This Message was Edited on 03/30/2009]
  2. TeaBisqit

    TeaBisqit Member

    I think it's just amazing that after all this time, doctors and the media still refuse to acknowledge how severe this is. It is a worldwide pandemic. It's everywhere. I am so sick of going into a doctor's office and they claim to know nothing about it. They will also claim that I am the only patient they have ever seen with it. I don't believe it. I would like to know what is really going on with that. Why are we still being denied after all this time?

    I also want to know the cause so we can fight it. Something did this to us. There is some infectious thing out there or some toxin that did this.

    I hope we get answers and I hope we get validation and justice. We need proper medical care.
  3. jasminetee

    jasminetee Member

    I can't believe how I'm the only CFS patient that many of my doctors and chiros have seen. Maybe we're not as numerous as we think. After all, the CDC and NIH changed the criteria to include exhausted and/or depressed people right? So their numbers of how much of the population really have CFS are now meaningless. I agree that there are people with CFS on every continent but how many there are I don't know.
  4. TeaBisqit

    TeaBisqit Member

    It seems like nearly everyone I know has a relative with it, but they call it Fibro. So I guess if you go in and say you have CFS or CFIDS, that's when they don't know what you're talking about? I don't know. I told my dentist's office I have Advanced Lyme with Chronic Immune Dysfunction from it. They still claimed I'm the only Lyme patient ever. And when I went for Xrays for my leg, the Xray tech told me she didn't know what Fibro was. Yeah, right. I don't know how anyone today can not have heard of Fibromyalgia at the very least.

    I'm more amazed that there are healthy people in the world who are not in pain. I'm just like, you mean you really aren't hurting all over like me??? And you have energy??? How is that possible??? I'm 39 and dying over here. I feel like I'm 99.
  5. jasminetee

    jasminetee Member

    It is weird how I end up with med techs who know nothing about any of these illnesses. I educate everywhere I go. I couldn't believe it when a lab tech said to me, "Oh, Fibro, isn't that when it's all in your head?" She meant it in the nicest way though. Seriously, she had no clue that that was offensive, so I didn't take it that way. She was young and brand new.

    Most medical people are still completely clueless from what I can see. They are perceived as very intelligent but.... from what I read around the Web I don't think so. They don't just treat US badly, they treat people with cancer and MS badly, miss broken bones and tell the patient the pain is all in their head and they don't have a CLUE about menopause or perimeno for the most part. They know how to Rx. Unless you get lucky and find a good one.

    When you find a doctor who at least is willing to learn or believe you, it's such a relief.

    I feel 99 all the time too.
  6. TeaBisqit

    TeaBisqit Member

    Wish me luck. There's a new young doc in my area and I just went to get my medical records transferred to her. I have no idea how she is going to treat me, but she takes my insurance. And she's the only one left at that practice who is still taking new patients.

    I miss the days of having an old fashioned doctor. You would go, they would know what to do and wouldn't look to farm you out to different docs. I hate the way the medical system is setup today.

    If she pulls the BS about take a happy pill and shut it, I'm going to try to get her to focus on my thyroid and arthritis. Usually, if you give them something they can try to do something about, that helps.
  7. ladybugmandy

    ladybugmandy Member

    the fact is, we don't look sick. and there aren't enough of us dying like there are with cancer so little is being done to help us. most of us are too sick to protest or write letters anyway. we are often poor so we are invisible.

    as hard as we have it, people in the UK have it even harder. my heart really goes out to them.

    i had a nervous breakdown once and a policeman came to the apartment. he saw me in bed in the middle of the afternoon and i told him i had CFS and had to rest a lot. he said "gee..wish i had that."

  8. jasminetee

    jasminetee Member

    Tea- I hope she turns out to be a good doctor for you. Just remember, they can fool you at first so go a few times before you decide about her. My fingers are crossed for you.

    Sue- I say we all get together and pray for that policeman. Let's pray that his wish comes true. lol ;)

    Cal, it does seem that Fibro gets more attention out there than CFS. I think one reason is that at least Fibro has the Tender Point Exam to Dx it. CFS doesn't have anything like that. Also, people with FMS only can often handle taking meds more and quite often benefit from them. Whereas it's common for PWCs to not be able to tolerate them or not gain benefit from them.

    Now I know there's many exceptions to that but that's the norm from what I've experienced and also read.