Poll Do You Have Progressive Chronic Fatigue Syndrome (ME/CFS)?

Discussion in 'Symptoms' started by Cort, Jul 21, 2015.


Please click on any of the below which apply to your disease progression, if any, OVER TIME

  1. Worsened or new neurological symptoms, e.g. blurred vision, weakness, burning, tingling, numbness

    184 vote(s)
  2. Increased sensitivities to stimuli

    156 vote(s)
  3. Increased disability (more time spent at home or bed)

    202 vote(s)
  4. Development of autoimmune disorders (Sjogren's, lupus, multiple sclerosis, etc.)

    53 vote(s)
  5. Development of comorbid disorders (fibromyalgia, IBS, TMD, migraine, interstitial cystitis)

    155 vote(s)
  6. Increased gynecological symptoms or disorders

    74 vote(s)
  7. None of the above apply

    2 vote(s)
Multiple votes are allowed.
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The Progressive Form of ME/CFS

    Different forms of disease abound. There are different types of breast cancer, there's the relapsing-remitting form of MS and the progressive form and different types of depression.

    hey are slowly being uncovered in ME/CFS. Health Rising recently highlighted a "relapsing-remitting" form of chronic fatigue syndrome. Now Ellen Goudsmit and S. Howes ask whether a "progressive form of ME (or ME/CFS) should be differentiated from a non-progressive form.

    Howes S and Goudsmit EM. Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report. Phys Med Rehabil Int - Volume 2 Issue 6 - 2015

    Surveys suggest that most people with ME/CFS or FM do get a bit better over time. A small subset - probably early in the disease - get well, and a subset of patients get worse over time. Few long term studies have, however, been done. (The Simmaron Research Foundation is engaged in a study of the long term effects of ME/CFS. )

    A Case of Progressive ME/CFS

    First Howes and Goudsmit illustrate one case of progressive ME/CFS. The women they describe appears to have never been completely well. She experienced periods of weakness in her legs, nausea and dizzinness throughout her childhood. She was tested for rheumatic fever and took prophylactic penicillin for 6 years. Her dizziness and muscle fatiguability got worse as a teenager. At 18 she was diagnosed with infectious mononucleosis (glandular fever). Diazepam helped with her dizziness but after developing a tolerance to it she stopped.

    She was able to get through college and do postgraduate work. Around this time she was diagnosed with myalgic encephalomyelitis. A cold at age 40 triggered dizziness so severe that she became housebound. She also developed multiple chemical sensitivity. Betahistine, prochlorperazine, antihistamines and rehabilitation exercises were little help but a gluten free, low sugar diet helped her to be able to get out of the house and complete her University degree from home. CBT helped with her nightmares but nothing else.

    Her major deterioration, however, began in her fifties with a seemingly innocuous gut problem. She experienced fecal and urinary incontinence, low blood pressure (89/55 mmHg), loss of fine motor co-ordination, tremor, tingling in her hands and feet, difficulty breathing at rest (muscle weakness), clumsiness, episodes of sweating and dry eyes and mouth. Blood tests for Sjogren's Syndrome (not always accurate) and other disorders were negative. She was also diagnosed with osteoporosis and cervical spondylosis.

    Her neurological symptoms sent her to a neurology clinic where an MRI found cerebral white matter issues in the posterior frontal regions and parietal and temporal lobes (but not the brainstem, basal ganglia or cerebellum.) The neuroradiologist concluded she had "progressive white matter" changes that were not indicative of any known diseases such as MS, small vessel disease or CADASIL. She, like so many others with ME/CFS slipped through the cracks. She is an enigma.

    The Progressive Form of ME/CFS

    The authors propose she has the progressive form of myalgic encephalomyelitis (referred to as ME/CFS in this blog.). They assert that the post-exertional malaise she has experienced for years, the central nervous system involvement (dizziness and vertigo), the circulation problems (heat intolerance, symptoms worsening after a hot bath) are all part of one disease process.

    They note that progressive form of ME/CFS is poorly documented and rarely covered in the literature. Few studies of the long term effects of ME/CFS have been done. In general most people with ME/CFS are presumed to get a bit better over time but it seems clear that a significant percentage of patients get worse.

    A Heterogeneous Group


    This woman is just one example of progressive ME/CFS. Scratch the surface and variety of different patterns show up.

    • Short Term Progressive - Whitney Dafoe. Before ME/CFS Whitney was healthy. He appears to have had a mostly gradual onset with his health shifting downward over time. After a trip to India, however, his health dramatically worsened over a relatively short period of time. Six or seven years after disease onset he has one of the most severe cases on record.
    • Long Term Progressive - Unlike Whitney the person referenced in the paper had periods of ME/CFS-like symptoms throughout her life. She was healthiest when she was a child but even then experienced symptoms severe enough for her to be tested for rheumatic fever. Three events, two of them infectious, triggered a worsening of her illness: infectious mononucleosis/glandular fever during adolescence, a cold when she was forty and then a gut problem when she was fifty. She appears to been disabled but relatively functional until her fifties when her neurological problems skyrocketed after an apparently a gut problem. She's now described as being "severely disabled" but stable. It's seems likely that whatever caused her initial dizziness problems expanded and expanded over time.
    • Mildly Progressive/Regressive - I had no significant health issues as a child. I came down with a "gradual" (on the range of a month) non-flu-like onset of ME/CFS while in college. My ME/CFS symptoms were worse in the beginning and got better over time. I developed several comorbid conditions (severe multiple chemical sensitivities) and mild IBS, neither of which impacted my ME/CFS symptoms (fatigue, PEM, etc.) at all. You could put me in a group with progressive development of comorbid disorders but somewhat regressive ME/CFS.

    ME/CFS (and FM) patients are clearly going to show a great deal of variety in how their diseases progress. Understanding the stages of progression - what proceeded them and how they occurred - could provide insights. Different subsets of progression might be uncovered that help us understand the subsets present in the broad disorder. These kinds of inquiries are common in other illnesses. They have hardly been explored in ME/CFS.

    What forms of progressive ME/CFS do you think are present?

    Characteristics of Progressive ME/CFS

    The authors proposed that the key characteristics of progressive ME/CFS are
    1. A worsening of existing neurological symptoms or new symptoms, e.g. blurred vision in one eye, weakness in one leg, incontinence.
    2. A sudden increase in sensitivities and gastro-intestinal symptoms.
    3. Any improvements are limited and the disability tends to show a downwards trend.
    4. The patient has to spend more time at home or in bed.
    5. The development of new auto-immune diseases or symptoms suggestive of the latter, particularly Sjӧgren’s syndrome.

    (I altered the characteristics a bit for the poll. I added the development of co-mordid diagnoses such as irritable bowel syndrome, interstitial cystitits, temporal mandibular joint syndrome, migraine, MCS, fibromyalgia, anxiety and depression. I also added tingling, burning, numbness sensations to the neurological symptoms. I joined a downward trend in disability with spending more time at home or in bed and added gynecological disorders.)
    Last edited: Jul 21, 2015
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    No none of the above's so far...Maybe ME/CFS is inherently progressive?
    Justarose123 and Who Me? like this.
  3. Whistle Blower

    Whistle Blower New Member

    Cort, thank you for posting this. I feel very alone in this. I had CFS for 6 years, developed endometriosis and then Interstitial Cystitis. Then after 13 years in Fibro and then Sjogrens along with Common Variable Immune Deficiency with Lymphopenia. I don't know many others with CFS that have this much going on. I can't relate to just CFS folks anymore because there are so many balls in the air.

    Mine has gotten progressively worse. It's scary and I am wondering what's next. So far, no POTS or wheelchair, but I am scared that that is next.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I think you are hardly alone, unfortunately. It looks like you have lots of immune stuff going on. You remind me a bit of Donna Jackson Nakazawa - she had an autoimmune disorder and then all sorts of stuff piled on.

    At some point somebody is going to research all this and it's going to blow people away....

    I wish you the best of luck...
  5. Whistle Blower

    Whistle Blower New Member

    Thanks, Cort. I hope I am alive...as in it doesn't take forever to see some research on this. Two decades, six years and counting. I looked the woman you mentioned up. She seems to think it's childhood trauma that brings on illness. I had a normal childhood. A good one, actually.
    Last edited: Jul 21, 2015
    Merida likes this.
  6. Telula

    Telula Member

    I also have many diagnoses and illnesses/diseases including Chronic Variable Immune Deficiency, PCOS, Fibro and CFS, POTS and possibly soon to be Ménière's or something of the like.

    I got sick a lot as a kid and everything started crashing around age 11 and I have never been as well since.

    My pattern of worsening is huge worsening of symptoms followed by slower worsening followed by plateau period where I try to get used to the 'new normal' before it gets worse again. I have not gotten better in the 13+ years of this (since the big crash), not once.

    It hurts when I see stories of people getting better or going through up periods and I never get there even when I try all the same things and more. It's very disheartening. I'm near bedridden and am so scared I will become bedridden and never leave that state given my pattern of illness .
  7. lisapetrison

    lisapetrison Active Member

    Mine was progressive on all of these until I realized that my house had a toxic mold problem.
    After I focused on avoiding mold toxins and other toxicity that made me feel sick, all the symptoms started to reverse.
    The results of the mold avoidance survey suggest that on average (especially insofar as people are not living in a really bad location) people with ME especially but other similar conditions do see their symptoms reverse with mold avoidance.
    So I am going to suggest that this "progressive" version of the illness especially is one related to toxicity.
    Tonto likes this.
  8. lisapetrison

    lisapetrison Active Member

    That is not an answer choice though, so I don't feel like I can participate in this poll.
  9. Folk

    Folk Well-Known Member

    Well I actually started with Fibromyalgia so... So things are upside down, but yes, constantly getting worse and unlocked 10 bonus symptoms from my game in the last crash (which was the only one I had in 8 years).
  10. Victoria Feltner

    Victoria Feltner New Member

    My body was not right far back as I can remember as a child. Had trouble with knees, lived under a great deal of stress due to an emotionally abusive mother. Always had problems with my monthlys. Had severe cramps due to endometriosis starting at age 14. Have increasing problems with being cold, allergies, food sensitivities and fatigue. Handle stress at this point very badly. I'm age 63. My normal temp runs 97.?. Spend more time at home and have less energy than a year ago. Have Idiopathic Peripheral Neuropathy and all my joints and muscles, etc. respond negatively to below freezing temps or high heat temps. The least whatever that is on my food such as lettuce that is not properly washed in a restaurant reeks havoc with me. I can have vomiting and diarrhea from eating something and out of everyone that eats the same thing as me, I'm the only one that gets sick. I can't walk as much as I used to due to pain and fatigue. Eyes are blurry every day. In short, every day is a struggle and I'm not getting any better.
    Telula likes this.
  11. candy

    candy New Member

    I have always thought my cfs was progressing, but didn't know it is apart of the disease. I have fibromyalgia and hashimoto thyroid disease (auto-immune) for years. I have developed over time asthma, dermatitis and ibs. Recently started having burning, tingling and numbness in my feet and hands. Now has come anxiety and depression. I am pretty much home bound. I hope some day there will be a cure or medication that will help.
    GratefulWarrior and Telula like this.
  12. sharonklb

    sharonklb Active Member

    Apart from one short episode of remission, I have had progressive symptoms. Abdominal,Bone Density, Increased Joint Pains/Migraines etc and more Chronic Fatigue than ever before. Brain Fog is now so bad,I cant concentrate for long and forget everyday stuff more. I now hate leaving the house,due to the quick onset of symptoms:(
  13. Telula

    Telula Member

    I had my house tested for mold, not the answer for me personally. I don't think that's the end all be all of the progressive CFS answer, like in MS there are two types so why not CFS.

    zzz likes this.
  14. Snookum96

    Snookum96 Active Member

    I agree @Telula, I've not been exposed to mold that I know of and have moved 6 times in the last ten years. If it were mold exposure I cant imagine every place I've lived in had mold.

    Mine is progressive, I have CFS, IBS and fibro, just booked a laparoscopy for endo and my doc thinks I have EDS, POTS and thyroid disease. I need a wheelchair to leave the house now because of the POTS but haven't had any treatment for it yet so hopefully the new doc can help with that and I will be able to do stuff again, even a little bit would be nice.
    Telula likes this.
  15. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Some of these new symptoms (IBS, burning, tingling, numbness, anxiety and depression) could be described as a progression of the illness. Of course you have the thyroid issue in there to but thyroid problems are very common in FM and ME/CFS. It sounds like you fit the mold! d

    This is an area we clearly really need studies. I imagine the CFI is looking at this - perhaps in conjunction with Simmaron. I hope so..
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    She recognizes that childhood trauma probably set her up for the disease but recognizes that it's part of the picture some people and it's not the whole picture for anyone. Probably there has to be a genetic predisposition and then some triggering factor. Why these things start is a mystery. She is doing better using mind/body techniques. I don't know if they work better for people with former trauma or not.

    I didn't fit the traumatic childhood pattern either.
  17. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Lenny Jason now thinks the requirement that ME/CFS be of new onset should be shelved. I don't see why it could not be happening from day one.
  18. Tory

    Tory Member

    I have always thought that the relapsing/remitting ME I have isn't as remitting as I would like! I have got significantly worse after each relapse. My relapses have been caused by glandular fever and bereavement. Recovery gets slower each time and I have gone from mild to severe. I guess it depends on what happens in your life and what infections you pick up as to how ill you will get. Oh and how much you keep trying to push on through too.
    Teresa likes this.
  19. Mellie

    Mellie New Member

    I had to clear the tears before I could respond to this. Like Whistle Blower and Telula, I have felt very alone in this aspect. It's been overwhelming to me lately that I seemed like the only one who, no matter what I do, continues to get worse, but apparently, I'm not. So thank you Cort for bringing it to light and helping us feel not quite so alone.
    katvil, Merry, Maureen and 2 others like this.
  20. dippi777

    dippi777 New Member

    I suffered from horrible migraines which I first fainted with at 5, I often lost my vision n needed polaroid sunglasses. Then had bad swollen n painful knees at 9-10 then glandular fever at 11, which lead to depression n GF recurring.

    Ever since I remember trying my hardest to cope with pain, tiredness, depression n just feeling ill. Drs would say, cos u smoke, ur over weight etc n treat me like a hypochondriac. Family too. But then I didn't go til couldn't bare it which often meant I was in really bad need of antibiotics of even ambulance. Had bad widom teeth but reality was TMJ, bad periods, eyes blurring, straining to hear clearly, trigger fingers n other joints needing injections into them etc til finally diagnosed with Fibro at 37 ( later, ME n SAD) by then couldn't walk from one lamppost to another without stopping, pain levels high so started buprenorphine patch on top of other meds.

    Things just cont to go down hill all my life, now find it hard to get out much at all, can't stand or walk more than few mins at pigeon pace, that's if I not swaying or shaking too much. Wheelchair been God sent but often find the paths to uneven n painful n buses are agony. Wake most nights doesn't help.

    I empathise with u all n life events, history, relationships, struggles, poor health n over working all seem to have played big parts. I whole heartedly recommend u cut right down contact with friends nfamily that don't wanna truly try to understand cos life is hard enough n any negative emotions or abuse has bad physical consequences.

    It's not all in our head who seriously would make up they had difficulty to see, hear, speak, eat, sit, walk, wash, write, think, sleep, let alone how difficult chores are n thats before u factor in the pain which allows no other thoughts at times n always there just incase u wanna try again.That would be unreasonable to believe, but that's what we cope with everyday.

    Hope u all find someone to share experiences with, to support each other n have a good laugh over ourselves cos it is by far the best medicine. X
    Last edited by a moderator: Jul 22, 2015
    Cort, Merry and Maureen like this.