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

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

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

    Votes: 188 83.2%
  • Increased sensitivities to stimuli

    Votes: 158 69.9%
  • Increased disability (more time spent at home or bed)

    Votes: 206 91.2%
  • Development of autoimmune disorders (Sjogren's, lupus, multiple sclerosis, etc.)

    Votes: 53 23.5%
  • Development of comorbid disorders (fibromyalgia, IBS, TMD, migraine, interstitial cystitis)

    Votes: 155 68.6%
  • Increased gynecological symptoms or disorders

    Votes: 74 32.7%
  • None of the above apply

    Votes: 2 0.9%

  • Total voters
    226

lisapetrison

Active Member
If "avoiding mold" were just a matter of getting the house tested or moving, then everyone would have done it already.
When I talk about mold, that is not what I mean at all. There is a lot more complexity to it than that.

I don't know what all I'm allowed to link to here, but I feel confident that I should be able to link to some of Cort's articles on this topic. So here they are.

Julie Rehmeyer's story:
http://www.cortjohnson.org/blog/2014/05/02/constant-vigilance-julie-rehmeyers-mecfs-recovery-story/

Giles Meehan's story:
http://www.cortjohnson.org/blog/2014/04/11/different-world-mold-story-giles-meehan/

Joey Tuan's story:
http://www.cortjohnson.org/blog/2014/01/27/despair-life-again-healclick-founder-joeys-chronic-fatigue-syndrome-story/
 

Linda B

Active Member
As a parent of a daughter who became ill (with identifiable viral onset and still 'tired' seven years later) I wither inside to read what may be ahead of her. So far, despite inactivity for such a prolonged period she has not gained much weight. I have been able to 'control' her diet til now.....at 20 years old I don't have total influence anymore, but I am sure she knows the boundaries. Early in this process we got a whole body vibration machine to help maintain some muscle integrity. Whilst it is not the ultimate answer there seems to be something to say for keeping the lymph system activated for toxic 'disposal'. Be well informed...the WBV system is only for VERY short usage times, especially initially when you are so tired. In fact she started with less than one minute per day.
So far the 'progression' is at bay. I shall continue to read the wonderful shared stories and information on the site.
If wishing could make it so.....I would wish you all better in a moment! Keep strong. Know you are worth every effort to make your lives better, even in small increments.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
If "avoiding mold" were just a matter of getting the house tested or moving, then everyone would have done it already.
When I talk about mold, that is not what I mean at all. There is a lot more complexity to it than that.

I don't know what all I'm allowed to link to here, but I feel confident that I should be able to link to some of Cort's articles on this topic. So here they are.

Julie Rehmeyer's story:
http://www.cortjohnson.org/blog/2014/05/02/constant-vigilance-julie-rehmeyers-mecfs-recovery-story/

Giles Meehan's story:
http://www.cortjohnson.org/blog/2014/04/11/different-world-mold-story-giles-meehan/

Joey Tuan's story:
http://www.cortjohnson.org/blog/2014/01/27/despair-life-again-healclick-founder-joeys-chronic-fatigue-syndrome-story/
Thanks for mentioning them Lisa :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think the 25% of people with a diagnosed autoimmune disorder is a rather stunning figure!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
As a parent of a daughter who became ill (with identifiable viral onset and still 'tired' seven years later) I wither inside to read what may be ahead of her. So far, despite inactivity for such a prolonged period she has not gained much weight. I have been able to 'control' her diet til now.....at 20 years old I don't have total influence anymore, but I am sure she knows the boundaries. Early in this process we got a whole body vibration machine to help maintain some muscle integrity. Whilst it is not the ultimate answer there seems to be something to say for keeping the lymph system activated for toxic 'disposal'. Be well informed...the WBV system is only for VERY short usage times, especially initially when you are so tired. In fact she started with less than one minute per day.
So far the 'progression' is at bay. I shall continue to read the wonderful shared stories and information on the site.
If wishing could make it so.....I would wish you all better in a moment! Keep strong. Know you are worth every effort to make your lives better, even in small increments.
Good luck with your daughter Linda.

(I don't know if you're using the Caregivers Forum as well but if you'd like to and you're not registered for it just let me know.)
 

tatt

Well-Known Member
As a parent of a daughter who became ill (with identifiable viral onset and still 'tired' seven years later) I wither inside to read what may be ahead of her. So far, despite inactivity for such a prolonged period she has not gained much weight. I have been able to 'control' her diet til now.....at 20 years old I don't have total influence anymore, but I am sure she knows the boundaries. Early in this process we got a whole body vibration machine to help maintain some muscle integrity. Whilst it is not the ultimate answer there seems to be something to say for keeping the lymph system activated for toxic 'disposal'. Be well informed...the WBV system is only for VERY short usage times, especially initially when you are so tired. In fact she started with less than one minute per day.
So far the 'progression' is at bay. I shall continue to read the wonderful shared stories and information on the site.
If wishing could make it so.....I would wish you all better in a moment! Keep strong. Know you are worth every effort to make your lives better, even in small increments.
First let me point out that inevitably the people who don't recover tend to be on these forums while those who do move on. This is not a representative survey of people who develop problems. Adolescents tend to do better.

Secondly I have a vibration machine, unfortunately I had to stop using it as it was making me ill. I recommend free weights to maintain muscle tone but you need to be very careful of aerobic exercise. Your daughter needs to be careful with diet but when bedbound its difficult to eat little enough to maintain weight without also missing out on important nutrients.

Thirdly there are more promising developments in ME than there has ever been. An article you may wish to read http://www.psychiatryadvisor.com/opinion/the-role-of-antiviral-therapy-in-chronic-fatigue-treatment/article/405424/
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
First let me point out that inevitably the people who don't recover tend to be on these forums while those who do move on. This is not a representative survey of people who develop problems. Adolescents tend to do better.

Secondly I have a vibration machine, unfortunately I had to stop using it as it was making me ill. I recommend free weights to maintain muscle tone but you need to be very careful of aerobic exercise. Your daughter needs to be careful with diet but when bedbound its difficult to eat little enough to maintain weight without also missing out on important nutrients.

Thirdly there are more promising developments in ME than there has ever been. An article you may wish to read http://www.psychiatryadvisor.com/opinion/the-role-of-antiviral-therapy-in-chronic-fatigue-treatment/article/405424/
That's very true. The people on here are the people who are still looking for answers...Good point. And of course if 1 million people have this and 10 million have FM - 99% of people with these disease aren't on any Forum anywhere..which seems a little strange to me.
 

tatt

Well-Known Member
cort when you are bedridden and sleeping most of the time you aren't on any forums. I had to recover a it before I was well enough to be here. The 25% who are most severe are rarely on any forum, although their carers may be.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
cort when you are bedridden and sleeping most of the time you aren't on any forums. I had to recover a it before I was well enough to be here. The 25% who are most severe are rarely on any forum, although their carers may be.
Another good point - the most severely ill aren't here either...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I got this in an email from someone who couldn't get in but who has halted the progressive form of her ME.

I tried to click on the survey but couldn't get access.

I was diagnosed with ME at the age of 35. After the first few years, things improved- although there were flare ups. Though I could work, social activities were restricted as work took most of my energy. Things started to deteriorate in my fifties, probably due to hormonal changes, as the illness had always manifested worse prior to- and during-menses. Eventually I was medically retired at the age of 58.

I am now 62 and the disease has progressed rapidly, including the development of orthostatic intolerance. My mobility has become severely restricted so that outside our bungalow, it has been necessary to use a wheelchair or mobility scooter. Many days and weeks have been spent lying in bed or on the sofa. I have also developed dyslexia in some of my written words- this is unusual for me as previously I was a professional bid writer. My written and verbal communication skills have certainly been impacted.

Thankfully the use of LDN has halted the progression- and there has even been an improvement, which is partly due to the LDN and I believe partly due to my GP agreeing to including some T3 as part of my treatment for hypothyroidism. Despite the improvement, I still have to rest all morning before getting my daily bath shower late morning/ lunchtime- if I don't do this I pay the price thenext day! I also still have to avoid any level of exertion or I can soon be flat on my back again but the recovery time is now a few days- not three weeks or more!

I would highly recommend LDN, but it is important to start on 0.5 mg and increase by 0.5 per fortnight- up to tolerance level. Even now, after several months, I have to stay just under 4 mg! I also have been having- and would recommend- goat's kefir to help with yeast/ gut issues.

I am excited that Rituximab could become available in the not-too-distant future! I feel confident that a great many of us will respond to this drug.
 

Bon Marie

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.
~Hoping we have the strength to carry on as we await better treatments. I have cycled ME/CFS relapse /remission for almost 20 years. About 3 years ago, relapsed & never recovered. Turns out I had also developed Mast Cell Activation Disease. Now PEM, meds, a feeding schedule, a gamut of never before environmental, chemical, insect, & food related allergies rule my life. Mostly housebound & miserably bedridden. My career, house, financial security, social life-gone. My beautiful pink satin pointe shoes are hanging on a hook over my bedroom door…
 

Who Me?

Well-Known Member
@Whistle Blower Misfit Toy on Phoenix Rising has a ton of other things going on. CVID, Sjogrens, FM, I forget what else. Maybe check in there to see what she goes through.

I think most of us have multiple things going on to one degree or another. You just really got hit hard.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
~Hoping we have the strength to carry on as we await better treatments. I have cycled ME/CFS relapse /remission for almost 20 years. About 3 years ago, relapsed & never recovered. Turns out I had also developed Mast Cell Activation Disease. Now PEM, meds, a feeding schedule, a gamut of never before environmental, chemical, insect, & food related allergies rule my life. Mostly housebound & miserably bedridden. My career, house, financial security, social life-gone. My beautiful pink satin pointe shoes are hanging on a hook over my bedroom door…
That's really rough Bon Marie. I wish you the best!
This disease needs sooo much more attention that it gets....
 

Justarose123

Active Member
Well car accident in 2005 whiplash, concussion, multilevel stenious in neck. Pain was horrible couldn't sleep at night for months at a time. I would think oh I finally had a great night sleep to only fall asleep at my desk 10 minutes later by security.

My nerves in my lower back would shoot down my backside and my leg would just give out. But I still had hope they would find it. They seemed to think it should be Lyme because I had just returned from camping before my accident. Test negative.

Diagnosed fibromyalgia, Tmi, migraines, and my eyes were horrible blurry and see silver floaters all the time. My eye exam 1 yr before was 20-20?

Then I caught Mrsa, and it took a long time to rid me of it. Finally operated.my legs were already red and swollen most nights, twitching(low potassium) now my foot had what looked like a bite, next day my leg was 3 times the size, that's when the EbV infection reactivated .

My stress was the worse it ever was and no mess could lower it. Next thing I knew I was completely bed ridden. Oastearthritis, chari marie in both feet-operated. Had at rand half retrieve but then next onset hypothyroid, low high 37 and extremely low testersterone worse case doctor ever saw, oh developed hyplori, have high iron deasease, lost my hair, eyelashes and eyebrows 3 yrs ago.

Now I do not like to socialize mythoughts are always forgot on in a conversation. In bed on bad days need absolute silence. Low D even with high supplication. Low posttasium sent me to hospital quite a few times always dyhidrated. What's gonna be next? And I hope I didn't forget to much.

Oh one thing had bad inner ear infection in 2005 showed on Mri told my dr. Hurt and swells behind ear. Ignored in 2007 air infection moved to mastoid which says can enter brain tissue. Still dr. Wasn't worried. We will see I guess, Rita
 
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Justarose123

Active Member
That's really rough Bon Marie. I wish you the best!
This disease needs sooo much more attention that it gets....
You remind me so much of my condition can you explain about mastoid condition I have them too according to my last 2 mri's...I hope you feel better! I hope everyone with these conditions does. Or as we get older we are not going to have any security to care for ourselves or nurcinghome, and I bet our government won't fund that either, Rita
 

VJ Knutson

Active Member
It is difficult to know when all of this really started. In retrospect, I have never had the amount of energy other people seem to have; had severe allergies all my life; and as time progressed developed ibs, food sensitivities, increasing bouts of illness, racing heart, and so on. Eventually a diagnosis of fibromyalgia and then four years later ME. I did have a stressful childhood, ended up raising three children on my own, was exposed to toxic amounts of mold, and had surgery for breast cancer - all supposedly before ME - however; in reviewing my charts, my doctor and I now question when this disease actually did start.
Without clear diagnostic markers, it is difficult to be certain about anything.
 

Zapped

Well-Known Member
"Maybe ME/CFS (IT) is inherently progressive?" - Cort

Of course, the answer in part is dependent on what 'IT' is. If IT is the same ME/CFS which I feel and have experienced for almost 30 years then 'IT' is unequivocally progressive. There are many others who have validated my opinion by relating their own stories which more or less align and ring true with my own experience. Like the hands of a clock we didn't see movement until later on... .

My reservation to otherwise equivocate is that I have seen at meetings and read of so many accounts that are not like mine (with CFS) that I am absolutely convinced the readership in these forums is comprised of many varied and unrelated illnesses, perhaps many yet to be classified. Some stand out as obviously divergent from ME while others are subtly self admittedly symptoms of other and multiple conditions, and not least are those that appear psychiatric now, or in etiology.

It may be this diversity on the face of our population (here) that makes the outside world look askance at any one of us!
This ambiguity in turn has thwarted the treatments and sent research into multiple tributaries.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It is difficult to know when all of this really started. In retrospect, I have never had the amount of energy other people seem to have; had severe allergies all my life; and as time progressed developed ibs, food sensitivities, increasing bouts of illness, racing heart, and so on. Eventually a diagnosis of fibromyalgia and then four years later ME. I did have a stressful childhood, ended up raising three children on my own, was exposed to toxic amounts of mold, and had surgery for breast cancer - all supposedly before ME - however; in reviewing my charts, my doctor and I now question when this disease actually did start.
Without clear diagnostic markers, it is difficult to be certain about anything.
Leonard Jason now says that people can have this from birth or very early on. It doesn't happen that often but it does happen -- and the people who have it early look just like those who get it later.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
"Maybe ME/CFS (IT) is inherently progressive?" - Cort

Of course, the answer in part is dependent on what 'IT' is. If IT is the same ME/CFS which I feel and have experienced for almost 30 years then 'IT' is unequivocally progressive. There are many others who have validated my opinion by relating their own stories which more or less align and ring true with my own experience. Like the hands of a clock we didn't see movement until later on... .

My reservation to otherwise equivocate is that I have seen at meetings and read of so many accounts that are not like mine (with CFS) that I am absolutely convinced the readership in these forums is comprised of many varied and unrelated illnesses, perhaps many yet to be classified. Some stand out as obviously divergent from ME while others are subtly self admittedly symptoms of other and multiple conditions, and not least are those that appear psychiatric now, or in etiology.

It may be this diversity on the face of our population (here) that makes the outside world look askance at any one of us!
This ambiguity in turn has thwarted the treatments and sent research into multiple tributaries.
I agree - this disease may be amazingly diverse. I think there are probably many paths to it. On the other hand there may be some core dysfunctions that many of us have in common...
 

Zapped

Well-Known Member
After all the evidential searching with no clear cut findings for cause or marker - around organs, in and out of cells in every system (even under rocks,), maybe the diversity and the common dysfunction have the same external origin (exogenous).

IMO, 'stress' has always played some key role. Maybe we PWC's are the relatively few casualties of simply having pushed too hard along the way and our systems blew a gasket - and the aberrations began, with multiple manifestations, all leaving no visible clues.

For me, this is why rest seems the most palliative treatment, and it begs the question: is there a protocol waiting to be discovered that restores what rest apparently contributes, whether by medical or other biotechnial methods?
 
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