Several studies suggesting that people with recent onset chronic fatigue syndrome (ME/CFS) differ immunologically from longer duration patients may have uncovered a new subset. No studies that I know of, however, have examined a subset that’s been evident at least anecdotally for quite some time: the relapsing/remitting subset – people with ME/CFS who become well for extended periods of time only to relapse later on.
While this survey is an attempt to learn more about this subset it is for everybody. Whether you have the relapsing/remitting form of ME/CFS or the non-relapsing remitting form please take it.
Relapsing Remitting Disorders
People with the relapsing – remitting form of ME/CFS can experience periods of wellness followed by dramatic relapses
Other disorders can have a relapsing/remitting nature. Most people (85%) when first diagnosed with multiple sclerosis have a relapsing/remitting form of it. During their relapsing phase inflammation damages the nerves. During the remitting phase their symptoms can partially or even fully disappear. People with the relapsing remitting form of MS tend to have more brain lesions and inflammation while people with the progressive form tend to have more spinal cord lesions and less inflammation.
People who have had malaria in the past can experience relapses years later as heretofore dormant liver parasites reactivate. The Borrelia bacteria can cause a short-term relapsing condition called “relapsing fever” characterized by periods fever, wellness, fever, wellness, etc. Migraine could be construed as a short duration relapsing-remitting illness.
Some people with autoimmune diseases can have periods of remission followed by relapses. Donna Jackson Nakazawa was able to regain her ability to walk and work after suffering from sudden paralysis due to an autoimmune illness only to suddenly collapse several years later.
The Relapsing Remitting Form of ME/CFS
Dean Echenberg has the relapsing/remitting form of ME/CFS. This former doctor and epidemiologist had this to say about having it:
Should studies take this form of ME/CFS/FM into account?
“I think this is a problem with much of the research I have seen. Questions regarding the presence or absence of symptoms and functionality often have a check-list that asks how the patient feels today. Sometimes they ask about the last few days, or even the last year, but the questions are not presented in a way that provides valid information on the dramatic variability some people experience. They assume a constancy in symptom presentation that may not be present.
While many studies might assume a certain rhythm of the disease process, I am not aware of any that take into account the irregular periodic interplay between the rapid appearance of total prostration, followed by complete disappearance of symptoms, over and over again. The sampling of patients must take into account the phase of the pathophysiology they are experiencing.
I am not certain if this phenomenon is a general characteristic of this disease and seen in all very long term patients. But I do know that it is an important characteristic of at least a subset and that it needs further attention.”
This survey is presented in an attempt to get an idea of how abundant this group is. It contains two parts:
- the first is for people who do not experience this relapsing/remitting pattern
- the second for those do experienced a relapsing/remitting pattern of illness
Dean Echenberg’s Story
“Irregular periodicity of ME/CFS with recurring clinical remissions and relapse may be a key to understanding it” Dean Echenberg
My problem struck almost 30 years ago. I can tell you the time it hit me within minutes. I had the usual bad flu that didn’t go away for a couple of years. I have been seen by multitudes of medical specialists and have had too many tests – all of which were all negative except for some obscure malfunction of Killer T-cells. But that is it.
Even the most skeptical of the medical practitioners I have consulted with have agreed with the diagnosis: at the time it was called CFIDS (Chronic fatigue and immune dysfunction syndrome), now officially called ME/CFS or SEIDS
Over th
e past 30 years the illness has waxed and waned and not at all in a subtle away. It is almost like I have an on and off switch. The remission phases have varied in timing but not in character. At times I seem to be completely better. So much so that for years I thought I was “cured”. During this phase, even close family, who didn’t see me when I was in the attack phase, had difficulty believing that there anything was wrong with me.
But then, when they saw me in the attack phase, (the bed to couch and back again phase) they had no doubt. All they had to do was look at me and they knew I was seriously ill.
I would seem perfectly normal; then BAM. It was obvious to them that, suddenly, there was something seriously wrong with me. This was especially problematic for me during the earlier decades when I became ill. If I saw a clinician during a remission phase, I was almost embarrassed to tell them what was wrong, it seemed so far-fetched.
_________________________________
Dean Echenberg was a Public Health physician and epidemiologist. After receiving a PhD in epidemiology at UC Berkeley, he became the Director of Disease Control in San Francisco in 1982 in the early years of the AIDS epidemic and remained there during the time it grew to its peak. After retirement he worked pro bono as consultant for various international NGO’s, WHO, UNICEF etc. in international humanitarian aid and disaster assistance programs.
(This survey was “rejiggered” late Tues. night; the results you see come from after that.)
Who is this information for?
Who would be doing the follow up with willing responders of Part II of the survey?
Is there a stipulated duration for “remission” “recovery”?
It’s Dean and I. He came to me with the idea of the survey. It’s a group I’ve always really been interested (never having significant remissions). We’re putting it out there – hoping to attract some attention to this group and seeing what happens.
We thought at least 3 months for remission…
My exascerbations come on from new problems, after I have worked to improve whatever seems to be triggering it. Sometimes it is environmental, like working in a building with mold or poor circulation, sometimes it is food related, sometimes overexercise, sometimes large emotional stressors, and now my problem seems to be reactivation of viruses from the past. I am running out of ways to protect my immune system from further damage.
I’d be happy to help with research/analysis within this area/survey area if you are interested. I have a background in research, PH, and other science fields. Happy to volunteer.
I just wanted to mention the question asked if it came on as a flu like symptoms and other such options. My cause was very very clear–following mono, which I understand is a sub-set of persons with cfs/ME but there was no where to put that answer in the first set of questions. I also am of the subset with pre-existing MCS and there was no where to put that in the first set or questions. However, in the 2nd set of questions I was able to include. That is great there is a survey for those who have intermitted improvements which I do yearly, now for 19 years.
Mine was also following a bout with mono. I caught step throat just as I was getting better and I’ve not been the same since.
Yes, this is important.
The improvements that people experience via mold avoidance consist solely of taking control over this process – purposely removing the inflammatory triggers from the equation so that the system can calm down and go into a remission.
Undoubtedly a lot of the “random” remissions in patients not pursuing avoidance are due to this factor too, except that those people have not learned how to tell out when they are or are not being exposed.
I believe that a majority of the «recovery stories» are due to natural remitting periods. If a person tries one intervention/treatment after another to improve and all of a sudden experiences symptom relief, it’s a natural human inclination to attribute the improvement to the treatment one is currently undergoing. This is a logical fallacy that fools even doctors and other health practitioners because it’s so tempting to see patterns where there are none.
The placebo effect is extremely strong when people are «blind» to the fact that it’s a bogus treatment. That combined with a natural relapsing/remitting path of the disease are the perfect recipe for «miracle histories» in our community.
Personally I have never heard of anyone getting well or getting rid of ME/CFS without them being in the relapsing/remitting group. The ones among us with a steadily worsening or a non-relapsing/remitting form of illness over years and decades are not experiencing the miracle-recovery-by-whatever-treatment that is steadily sold in as fantastic news in our community.
The saddest part is the complete waste of time, energy and money on these «cures», and the heavy belief (almost religious) that this or that has cured him or her, when in fact it’s just a coincidence, a sum of several interventions or an illness in natural remission. Ignorance is bliss, you know.
I agree
Ditto.
I agree. Ditto! For me, these remissions naturally occured.
I know what you mean. I used to think that something had cured me when I had an 8 month remission. That is the only remission I’ve had though. The treatment I clung to for so long was actually harming me. It wasn’t until I found a general practitioner who took CFS seriously that I learned about why the treatment was bad for my heart. (if you’re curious, I was using a very high does of bio-identical T3 hormone.)
This applies to fibromyalgia as well, despite the various supplements, at great cost, various practitioners promote. I always suspect they never really had fibromyalgia or just went into spontaneous remission.
I disagree. I have always tried to correct the relapse while it is happening, and have learned with each relapse that it has been environmental, food, viral, heavy metals from teeth, overexercise, or stress to be the cause. Once my immune system and autonomic nervous system have a chance to correct themselves with amino acids, vitamins, neurotransmitters, rest, environmental change, food changes, etc, I get better. However each relapse brings me back to being less able to participate in previous activities without new modification. I realize I will never be back to the way I was 18 years ago, but I refuse to give in to this disease/syndrome.
I suspect you are right, PM, based on my experience. I often feel I have finally cracked it when I feel better coincidental to making some change – gluten avoidance, antibiotics, supplements, etc. – and believe I have control of my health again only to relapse. Like you, I now assume that tales of recovery are actually tales of remission. That said, a long remission is a lovely thing.
I absolutely agree. After almost 35 years of having CFS/Fibro and falling into the relapsing-remitting subset, I have come to the realization the disease follows its’ own pattern. Early on, I would think it was something I did or didn’t do to cause the symptoms to wax or wane until after many years I have determined the pattern is there is no pattern. It does what it is going to to when it is going to do it. A very hard and difficult circumstance to psychologically deal with. Human nature looks for predictability. These diseases are not predictable – at least in my case.
” I have determined the pattern is there is no pattern.”
You know when they expose mice to pain, even severe pain, they can handle it fairly well. But if they expose mice to pain that is irregularly produced – they go downhill fast.
Hi Cort,
You are spot on! I have been seeing a psychologist every month for the past 16 years due to this unpredictability in order to cope with it. There is a famous book called ‘Learned Optimism’ by the psychologist Martin Seligman PhD. who is considered the “father” of the modern theory of the roots of depression. His famous groundbreaking study is the very one you mention, except with dogs if I recall. According to Seligman, it is the loss of predictability and control that is the root cause of depression. Everyone with our diseases, has suffered or is suffering from the loss of control and unpredictability…normal result is depression. It is a travisty that most of the docs out there missed this chapter in Psych101 class!!
Totally agree, Kitty !
I also agree that it is just coincidence with these so called cures. My remissions are natural remissions, like a switch being flicked, and I can’t relate them to anything I have done differently or anything I have tried.
I can’t find a pattern in my remission periods, but there definitely is in my relapses.
Cort, as always, thank you sooo much for all your hard work!
I would like to be included in your research on this subset
I want to express my sympathy with both the above points. Firstly heartfelt thanks to Cort.
Secondly I have recovered BUT don’t know why. I want to say that it happens BUT always say I did x and y BUt don’t know if it really helped.
I do this out of respect for those who endure this horrible illness but also want to keep hope alive. I think that when most people recover they often want to get as far away from it as they can. And this denial does not help those still suffering. So more power to this effort to understand this subset and search for clues. May it bear fruit for those who suffer each and every day.
These are my ME/CFS peeps –the relapsing/remitting variety! Dean’s recalcitrance to share his diagnosis with other practitioners when in remission period really resonates with me. After 13+ years of dealing with this illness, my most pronounced remissions have been during pregnancy and breastfeeding…stupidest thing I have ever done was wean my 2.5 yo last year…this monster came roaring back after years of almost normal functioning.
And this is why I have the bio-identical hormone pellets every 4 months. Closet thing to a good feeling I can get. my daughter is in her 40s and was tested and now treated with this also. It has helped her immensely.
Hi Brenda, can you tell me what is bio identical pellets are? I haven’t heard about them and I live in the UK. Are you talking about a type of HRT?
Thanks,
Ruth
Dana, this is why I have the bio-dentical hormone pellets implanted every 4 months. Closet thing I have done to feeling normal.
Oh my gosh Dana, that is exactly what happened with me! I was first symptomatic 3 months after I had stopped breastfeeding my first child. 3 years later got pregnant with my daughter and was completely asymptomatic during pregnancy and onset was nearly exact same timing post breastfeeding. Vengeance is indeed the word I too would use this 13 Years later!
Yes!
I always relapse after pregnancy, but not until after I stop breastfeeding!
I do feel that remission will happen gradually in its own, but I have found a few things that seem to help me speed up the process, and I’ve identified a few triggers along the way. The problem is that there is always another trigger.
There are a number of questions missing but obviously the most important one is the question about sudden or acute onset after an infection / viral illness
This was a pretty preliminary survey. I think we do that ask about sudden flu-like onset though
Hi Cort,
Well I am always reading about “flu like” in descriptions of sudden onset suspected to be viral, however I think that is not accurate or adequate or something. I had a respiratory infection which presented as extreme sore throat and bronchitis with an initial high fever. The sore throat and fever lasted about a week but the bronchial involvement continued for more than a year, with spasms.
So the presentation was respiratory, no particularly “flue like” but definitely viral, not bacterial.
So far things have followed a general slow downhill course, never had any remitting period.
I think it would be better to pose it as a sudden onset due to an apparently viral infection. I don’t think my experience was particularly unusual for those who acquire the disease via the respiratory tract.
I hope you find something out – I would love to have a remission.
Cheers,
Greg
I had a similar onset. No flu like symptoms, but more like bronchitis. It took three rounds of antibiotics to get the cough under control. That in turn, gave me a candida gut infection. And it was all downhill from there. I expected to get my energy back after it went away, but it never came back again.
I had a definite trigger. I was flying in an overly crowded plane and had to sit next to a man who coughed the entire time for the 2 hour flight. A week later I had bronchitis.
I also had been dealing with stress in the form of a full time caretaker for my disabled husband, and grad school, and starting my own private practice. I have the familial issue as well as my mother has it. Her mother did too, we think.
Feel free to contact me if you have any questions.
It’s a shame that there isn’t a general viral onset, rather than specifying flu-like. I had to use the sudden onset, but other trigger, for a viral onset. I had a gastroenteritis onset, although the factors leading up where multiple vaccines and pesticide/OP exposure. I have no fixed idea on causation, but the immune system is definitely a feature of this disease.
Susan, my aunt (dad’s sis), dad, and I all have some form of ME/CFS. Aunt and I have FM also. We all have different onsets…all chronically fatigued and at times nearly debilitated and/or have to kick ourselves to do the minimum. I’m the worst off w/ getting sick at 14 almost 10 yrs ago. I did have years where I could function and attend school w/ resting extra, infections, and symptoms coming and going but then had a relapse last yr. My dad has sky high EBV tiders and clonal t cell rearrangement, he’s about 70% figured out. I’m still a work in progress. I got cold after cold/flu-like illness w/ congestion, then it hit me like a train and felt like I had the flu for mos…red swollen tonsils, slightly low white blood count for about a yr indicating viremia of some kind. Haven’t been the same since.
These are my ME/CFS peeps –the relapsing/remitting variety! Dean’s recalcitrance to share his diagnosis with other practitioners when in a remission period really resonates with me. After 13 plus years of dealing with this illness, my most pronounced remissions have been during pregnancy and breastfeeding…stupidest thing I have ever done was wean my 2.5 yo last year…this monster came roaring back after years of almost normal functioning.
That is very interesting Dana. I have FM and, virtually every night from about 11 PM until I force myself to go to bed, my pain and fatigue diminish probably 75% and I feel the closest to normal that I get in 25 years. I told it to my intelligent but ineffective rheumatologist and I suggested I go in at that time for massive blood analysis and compare it to blood taken during the day. His comment was that there are a lot of things we don’t know about circadian rhythms and that we are no where near being able to do that kind of analysis. You are probably in the same situation with hormones.
Hormones, hormones,hormones!! Always higher in the am. Almost always. Like I said above, bio-identical pellets,every 4-6months. Has also given me and my husband a New lease on life.Daily and nightly !! Lol
Steve, my dad and I both have ME/CFS but w/ apparently different causes per Dr. Peterson. My dad is about 70% figured out w/ sky high EBV titers (he’s had it chronically over his lifetime on/off) and I’m a work in progress but harder to figure out (of course! psh). I was diagnosed w/ FM as a teen about 10 yrs ago by a Stanford pediatric rheumatologist. Anyway, BOTH my dad and I feel our best and most normal generally late in the evening…if we have brain fog it lifts more, more energy, feel better overall. But, then it is incentive to really screw up your circadian rhythm b/c then a person doesn’t want to go to bed til the wee hours. It can create a bad cycle, esp if one has to be up early sometimes or regularly.
I just answered the survey. Since there was no good way to make it clear on the form, I would like to clarify that just because I was diagnosed with fibromyalgia in 1990 and CFS in 2005, that doesn’t mean that I only *had* fibromyalgia from 1987 to 2004. I have had the same illness from the day I got sick (Sept. 7th, 1987); it’s just been a question of what doctors chose to call it.
Got it good point.
Same here,Merideth Dixon.
I think this is the case for many. For me it was diagnosis of CFS from an indeterminate viral cause, then FM diagnosis.
I started to fill out the relapsing part until I realized you didn’t want me to if my periods of remission are only 2-3 weeks long at times. Never have I experienced full recovery for >3 months. How did you decide upon the time frame?
Same here. I definitely have periods where I am much improved but 6-8 weeks is the longest I’ve been at that level. Not sure which section to fill out.
Pretty arbitrary really – a significant period of time in which it seems like a stable period of health has been achieved. If you have really dramatic shifts of health for several weeks that would certainly fit. Do you experience periods like that in which you feel quite well?
Well, I have had periods of time where I am not in severe pain and not extremely fatigued. In those times I have fewer symptoms overall. I am always at risk of causing another flare up like I am having now. I was ill for 9 years without much more than a few good days or a few good hours interspersed with the normally bad. Except for the first 9 years, when I felt like I was spinning out of control, I have always had brief periods of not so badness. Perhaps I am confusing this with remission. I do not think that after 25 years I will ever be the person I once was, nor could I be at this age. I am sure I have some kind of brain damage to my nervous system from that flu and I am grateful for whatever lessening of symptoms I have. I should probably admit to myself that pacing is responsible for most of what I refer to as remission. I live a very small life physically and have not worked for ten years. Work nearly killed me. And I have never regained, even when I feel well, the ability to do anything that stresses my HPA without consequences. I think when I am not in pain, and can feel “normal” when remaining very calm and in control of my surroundings, that I am in a sort of remission. Okay, that’s a sad fact but one I can live with after all these years.
Diana Maus, The issue of controlling you’re environment is terribly important for me also. I have 4 grand children and do not get to enjoy them say they do . And seems none of my family understands. More anxiety that I have to deal with. Btw, anxiety is my biggest stressor.And I cannot take aany of the antidepressants now. Too many side effects.only thing that helps are the benzodiazepines. Which none of the docs will prescribe. So I don’t get much interaction with my family.
I just shared this on social media to try to help with sharing the survey. But, now I’m thinking it’s not going to be useful if people are out in the cyber-sphere trolling/fake answers. Any quality control for this kind of thing? Just a thought.
I wouldn’t know how to do that at this point but hopefully its a small group that would want to play with the survey. In any case it’s kind of preliminary stab at this….
I filled out ‘Three months’ on the questionnaire because it was the smallest amount of time offered for describing what I came to call ‘mini-remissions’. Until finally seeing a ‘real’ ME expert-physician last fall, I had no idea that my ME story was at all atypical. Dr. Donna Felsenstein looked at me like I was crazy when I told her that I literally ran my way through the first twenty years of my ME ordeal until my OI finally blew up into full fledged POTS and pre-load failure that has rendered me disabled and unable to teach as a college professor.
After becoming sick with a ‘mega-flu’ in March of 1994, I limped along for four months, living with debilitating exhaustion, fever, migraines, swollen glands, and sore throat. After several months of this, though, I seemed to get better.
But better would only last for 2-3 weeks at the most. Subsequently, for the first ten years of my illness (1994-2003–roughly), I had what I called ‘infection cycles’ where I’d come down with an upper-respiratory infection with fever (along with the regular cast of characters–swollen glands, sore throat, flat-out debilitating exhaustion, brain fog, orthostatic intolerance). I lived a ‘double-life’ as a sick/healthy person. When sick, I was invisible, holed up at home. When ‘well’, I could actually exercise (run, take aerobics classes etc.), and keep up (at least during the day) with healthy people. But the second I did something that my body deemed ‘too much’, I’d fall down again with a flattening upper-respiratory infection that also came with a good deal of body pain (searing nerve pain in my forearms and legs).
After I became pregnant with my daughter (at 39!), I noted that my infection cycles came to an end for the most part. They were replaced by severe non-restorative sleep, brain-fog and grinding exhaustion that was unrelenting. My OI symptoms worsened. Then, at fifty, I developed disabling POTS and pre-load failure and I’m really pretty sick.
Yes, I can relate to this form of relapsing/remitting ME, when ‘well’ I can exercise like a regular person and my brain even works, but the most it might last for is maybe 2 months and sometimes a lot less. It feels like walking on a tight-rope when ‘well’ because I don’t know what my body will revolt at – even after 9 years.
I believe this is very important to know. We all have different stories but much like MS and other autoimmune illnesses you can have relapsing remitting or just an onset lifelong and unwavering. Thanks for doing this.
I love that you’ve created this survey and am happy to answer further questions to help gain an understanding of this illness. My initial symptoms after a bout of Glandular Fever where mainly debilitating fatigue. I did get some pain in hands and feet, but the main issue was the fatigue. I basically just worked and slept for about 2 years. Then one day I woke up, got out and bed and thought “I have energy” and for about another 2 years I was able to start running again and exercising. Still had some issues with my hands, and couldn’t run as much as I had been able to, but otherwise I was almost normal. Then I had a prolapsed disc in my back. During my recovery with this I started getting the chronic fatigue symptoms again, but this time associated with severe pain, hands and feet, burning of skin, muscle and joint aches, severe insomnia. I have had short periods of remission since then (approx. 6 months) but my symptoms have gradually increased until additional stresses at work just over 12 months ago caused a major “flare” resulting in my medical retirement from work. I’m still struggling with major symptoms now but really hoping that another remittance is on the way!
Isn’t that something.
My condition has been mostly unwavering…That’s one of the reasons I’m so interested in this other subset -it’s just so different. 🙂
I’ve been enjoying a short remission of symptoms and just pulled out a drivers license picture taken in early Jan. Very illuminating how bad I looked a few short weeks ago compared to today. It coveys much more information to others, doctors, friend, etc than words ever could. It may be to ones advantage to take well framed photos on a regular basis. At least to me very telling the extent of the relapse and remission. I can not replicate the look I had given my best try.
Tim, I agree. I have some pics from when I was sick as a teen about 10 years ago. I looked awful! I had a major relapse last year and once again looked awful. I still don’t look great but the pictures are really proof. No one can fake the droopy, fatigued, sad, pained eyes, more wrinkles than when more well, and at times puffy around eyes/face when waking for a few days at a time.
This discussion brings up an issue I find really confusing overall. Many people seem to have a very clear onset and easily distinguishable periods of illness and remediation. Mine seem to blur into one another. I can say that there are times when I’m clearly worse–especially after illness or trauma–but the good times aren’t ever “that” good–but I need to say I’m lucky not to suffer as much as most of your readers do. I haven’t been bed bound, but that may be in part because I indulge my needs to sleep in at all costs. Which is not to say that I don’t experience severe PEM, exhaustion from relatively limited physical, emotional or mental effort, cognitive difficulties, a broken thermostat, mitochondrial dysfunction, SIBO and IBS, bodily inflammation, painful muscles, an immune system that seems to be in hyperdrive, and extreme sensitivity to smells, chemicals, sounds, etc. I can’t really pinpoint when I became ill. It was sometime around the late 70’s or early 80’s, that I noticed being just so tired, weak, and dizzy, and I think it was about that time that I was “diagnosed” by a physician I saw once for an evaluation who said I had “Chronic Fatigue Syndrome and Reynauds Disease.” I was diagnosed with Fibromyalgia in 2000. Before the first diagnosis I had had numerous infectious diseases which I now look back at as possible triggering events. And there have been waves of better and worse since then, but it’s not as clear as the survey implies so I didn’t fill out the survey. I’m in a phase of “worse” that was precipitated in 2008 by 1) a very stressful completion of another graduate degree, 2) a weird flu-like illness that resulted in a hospital stay. and 3) a month later, a fractured ankle that did not heal correctly. But I don’t think I fit into either of the survey subsets. I’m commenting only because I hope this narrative might be helpful to add to the data you’re collecting.
Hi Cort,
I took this survey and look forward to the results. I wanted to let you and Dean know something on this question:
How did your illness manifest itself?
Sudden flu-like onset
Sudden onset – associated with injury/physical trauma/surgery, etc.
Sudden onset – associated with another trigger
Sudden onset – no identifiable trigger
Gradual flu-like onset (series of colds over time)
Gradual onset non-flulike
My onset fits a few of these answers. There were identifiable triggers, not a flu. But my initial illness after onset was flu-like. I had both Sudden onset – associated with injury/physical trauma/surgery, etc. and Sudden onset – associated with another trigger and initial flu-like symptoms after onset. But I only picked one.
Thanks L – good point. We’ll take that into account for the next survey.
I also struggled with answering the onset question. I initially had about 4 years of gradual onset – CFS type fatigue, sinus issues after exercising and always feeling on the verge of getting sick, which required a gradual reduction in activity levels. But at about year 5, I came down with a bad viral episode (not sure it was the “flu”) which resulted in a very sudden total inability to exert or exercise at all without severe PEM (and also developed orthostatic intolerance). 29 years later, I haven’t regained any tolerance for exertion or standing. So I feel I had both gradual and sudden onset of this condition, with no relapses unfortunately.
On prior post, I meant no “remitting”, not relapses. Couldn’t figure out how to edit. Sorry.
For me it is so Obvious that we have different diseases. I wonder how many there are. I see POTS/CFS, FM/pain/CFS, fatique/sleepy/CFS, immune/CFS, burnout/CFS etc…
To Gijs; I kind of feel like you do, that we have different diseases. Thanks to Cort for trying to ferret out some of the differences.
I tried filling out the survey on my Mac on Firefox, Google Chrome, and Safari – the pop up calendar refused to take my info on all three browsers.
No point in doing a survey that won’t accept data.
Ouch!
Mac does not work – we have lots of Mac users.
Sorry about that. Is anyone else with a Mac having that problem?
I am on an ipad and the survey worked fine for me. As an aside, I’d like to add that I have been diagnosed with both ME/CFS and fibromyalgia by Dr. Lapp. Perhaps your survey could allow us to choose more than one option in such cases? Thanks so much for doing this!
I’m on an ancient 2008 MacBook running OS 10.6.8 with Chrome, and it worked fine for me, pop-up calendar and all. And I have AdBlocker running.
I took the survey on my Macbook. I had to click on the calendar day before choosing the year. I also couldn’t type in the box.
I think this is a very promising approach to investigating ME/SEID and FM. Would that there were many millions of dollars more funds for this type of epidemiological data collection and analyses of onset and subsets! In the meantime, please keep at it as best you can.
I think the survey can be strengthened by better defining the relapse/remitting variety. I think most sufferers do relapse/remit (post-exertional collapse), as is shown in a number of the comments here, so unless this question is made more specific about length of time (accomplished here to some extent by saying “over 3 months”) and particularly a definition of “remitting.” Many have some good short periods but crash with overexertion.
And there is another point. Dr. Eschenberg, what caused your ME/SEID to come back? Did it just come back out of the blue, or was it after a period of what you might call overexertion, some trauma, exposure to a different environment, etc.? It would seem to me that this might be a key factor in determining a true subset. If all was perfectly normal in your life, and then the disease restruck, it is definitely different than the PEM variety of relapse.
Good article, Cort, and thank you, Dr. E. for your insights and efforts.
My disease comes and goes on its own. Seems to be a random switch. During the first decade I kept a serious log of what was going on with me, trying to find some connection with the return of clinical symtoms. I have not been able to find any connection with what I do or dont do. There is no connection with exertion in my case. It has returned when I was well rested and on the other hand, during the years when it was in remission, I was engaged in extreme physical and mental activities without any problems.
It’s just amazing…
I am reading this and going down the FMS rabbit hole. It brings all the bad memories back of when I was first diagnosed with FMS. It ruined my relationships, my financial life and still haunts me. I have had several remissions and exacerbations during the last 25 years. The only thing that has really seen me through is that I am as stubborn as a mule. To top it all off I became a nurse 15 years after my diagnosis. So when I had other nurses giving me report in the hospital, telling me about a patient “She says she has fibromyalgia” and rolling their eyes, I would keep my mouth shut and give that patient the best care I could. I recognize the look of sickness and pain, and offer an understanding that my patient might never have had. I remember “but you look so healthy.” I hope one day there is an answer for these disease syndromes! God bless you for the survey!
correction to a sentence above: I think most sufferers do relapse/remit (post-exertional collapse), as is shown in a number of the comments here, so unless this question is made more specific about length of time (accomplished here to some extent by saying “over 3 months”) and particularly a definition of “remitting,” you might well be mixing your sets of respondents.
Thank you for this survey! Sometimes I’m made to feel like I don’t have the disease proper since I seem to be able to recover. I’m not talking about a reduction in symptoms, but no symptoms at all! I worked full time and exercised loads and experienced stress and forgot about the disease entirely. And as one person said above, I didn’t interact with the CFS community as I wasn’t ill, so why would I?
I had the slow onset, glandual fever type CFS as a kid. Essentially used GET to get better age 14. From ages 16-21 I was great; maybe more colds than usual, issues with tonsilitus, but on the whole, pretty normal. Then 03/11/2010, after three days of feeling flu like and strange, I woke up and realised it was CFS. Took me 12 months to get back to work and 20 months til I didn’t think about it each day. After two years I even started training for a triathlon and showed absolutely no symptoms. I had two full years of completely normal health. Then 08/11/2014 same thing happens again. I’m slowly going to start doing some work from home, but am still really ill. I fit all the categories for CFS and ME, have the POTS going on and although I normally have migraines, they’ve got worse. No other disease seems to make sense, but still waiting on specialists.
I’m so lucky to be able to get better like that, and have a few years (!) of normal life where I get to put this stupid disease behind me, but there are some massive downsides to having this relapsing kind. I fall from quite a height; normally more energetic than your average person, and then I can’t walk properly within days. I don’t know how long the remission will last and I’m still grieving for my body five + months in. It seems to be getting better but for how long? There’s a strange part of me that just wants to be ill, but a stable level so I can just adjust. The fact that I can get better means I make plans that would be incredibly hard to go through with if another relapse comes. And what causes my relapses?! Viruses and stress seem to play a role, but I can’t avoid all of those things!
One advantage is I’m yet to meet someone who doesn’t believe me. After seeing how energetic I used to be, they know it must be pretty bad if I’m mostly housebound now!
I have both ME and FM but the survey wouldn’t allow both to be checked.
There should have been an ME/CFS and FM option? (I hope?)
Nope, just one or the other.
Hi Cort, The curious thing to me is that I keep reading that there is no way to diagnose ME/CFS, yet the survey asks when and whether by a physician or not. in my case, after 65+ years of good health running and walking/jogging 18 holes, I got a tick bite/with bull’s eye in Naples, FL last Feb. Shortly after returning to Cape Cod, MA, the fatigue symptoms (physical and cognitive) started and have continued to get worse, especially the PEM. All of my docs are at Mass General or Brigham and Womens. Any suggestions on how to get diagnosed (or not) would be appreciated. My newby primary care doc seems dubious that the syndrome is real. Thanks, Bill
Thank you for posting this survey. I have had ME for over 20 years but have had huge significant remissions during the last 10 years to the point where I was regularly playing squash, walking miles and went back to University, unfortunately I cannot sustain the remission. The triggers have varied and have often been an accumulation of pushing my boundary too far coupled with major stress/ and or illness. I suffer with periodic paralysis and have for over 30 years however the attacks are infrequent though severe but since having ME have always triggered a relapse when they happen as I know my entire system shuts down due to the fault in ion transportation ( studies have related ME/CFS to an ion channelopathy) However I have had relapses without the body trauma of periodic paralysis as I am currently in relapse now. I do notice significant inability to handle stress in the period leading up to crash as if my adrenals are in overdrive, this maybe due to an energy crisis which has already started. However at other times I can sale through very stressful events without effect. So for me it tends to be a combination of factors that lead to relapse, like the straw that broke the camels back but when I crash I really crash and have severe palpitations, sweats chills etc without any exertion. I would also like to point out that though I classed myself in remission I have never managed to hold down a full time post for more than 3-4 months before relapse.
Been ill since 1982. Had two remission s . Both following surgery. The first lasted about 3-4 months and followed a burst appendix surgery. The other surgery was four hours long, the remission shorter but still significant. Tonnes of antibiotics for the appendix . Not many for second more cosmetic surgery. When ‘it’ came back the second time, I could literally feel it coming up my legs and settling in over the period of a morning. I suspect it was the anaesthetic in both cases, although I spent along time thinking it was the antibiotics. I’ve responded to LDN, neurontin and suspect I’m an activated microglia ‘type’ ME/FM. Look forward to seeing the results
I have been thinking that it is the stress that body has to deal with itself when going thru a surgery. I had as well quite a big surgery and felt better for a month or two. Or is it how I mentally feel like having a permission to have pain after a surgery.. in my head and have to get recovering, like it feels that you can go through this? Kind of having something like eustress or what they call that… good pain, that you get to hope for a minute. Also I have felt perfectly fine when taking 10 days prednisolon starting with 60 mg ( twice,) but of course you can’t have that regulary.
I too, can identify with Dean’s experience.
This has been my history so far:
Occasional periods of what I now see as ME CFS throughout my 30s but only lasting two weeks at the most. This only happened about three times in ten years.
THEN …Glandular fever at age 42 which triggered the full blown version…
I am now 51….. Relapses have been fairly regular and occur about once a year…Nothing I do can stop them. I start by having some baddish days (after forgetting the ME CFS ‘feeling’ which is always a nasty shock) then gradually decline till I reach a hideous nadir, after which I gradually improve for no apparent reason… This process lasts about eight months.
In between I can function ok but have other issues (skin pain,gastrits, interstitial cystits-like symptoms)
I dont work any more (was a teacher) but can do tutoring from home.
The ME CFS ‘feeling’ is a different beast altogether….so difficult to describe and yet so horrible.
I have at times wondered about autoimmune diseases as I have a very dry mouth during my relapses (Sjorgrins perhaps?). However my ANA has always been firmly negative.
check out Lauren Stiles story. She had full-blown Sjogren’s and negative ANA’s. Her blood tests never showed a hint of an autoimmune disorder but a lip biopsy indicated she had Sjogren’s. It’s the only really accurate test for it.
Thanks Cort, I will.
Is this true of other autoimmune disorders as well?
My ANA is negative, but many other tests of nuns would indicate autoimmune.
Unremitting pain & fatigue for nearly 3 decades now. Life is very limited on the edge of the 25% group. I need a wheelchair outside the house with someone to push. Thank God for Pregabalin which allows me limited function, I’d be bedbound without it.
Thank you for running the survey
We went from fibro to cfs to Lyme and coinfections. Ordered a 23andme DNA test. Able to learn about methylation defects and how this affects the body’s ability [or lack thereof] to detoxify toxins. Heavy metal, mold testing etc. Hugs!
Good luck!
You have no doubt considered this chapter in Dr. Myhill’s book.
http://drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we_get_into_and_how_we_get_out_of_CFS
For the first time that I felt I was CFS/ME free, but only for about 3 months. And then I got another virus…
Multiple Flat rests and home made yoghurt seemed to be the helps to become CFS/ME free for me. But I follow the courses and information from Bruce Campbell’s CFIDSSelfhelp.org course which has taken me from 25 – felling only tied, but well enough to ride rhorse for an hour or two multiple times in one week.
Thank you for what your’re doing.
suzy
My late wife had fibro /cfs/me/seid for 20 years and killed herself 2-22-2015. She believes she transmitted cfs/me to me in 2009. I had suffered extreme stress and trauma and I’m certain my immune system was crushed. I was formally diagnosed in 2012 with cfs and went on full disability 12-22-2012. I’ve never experienced remission
Walt, I am very, very sorry about your wife, although the need to stop the pain is fully understandable, at least to my mind. May I respectfully ask you to fill out a Mortality Survey on her behalf? This is a study being done by Lenny Jason and associates (and for this survey I am one) to try to get a much more complete picture of why those who die after having ME/SEID have died. That is, would that person have died when she/he did if the person did not have this disease? What were the immediate causes of death, e.g., suicide, infections, surgeries, etc.? It’s a very well thought out and complete survey. We must get hard data on this. Even most of the IACFS/ME board last spring had to be intensely lobbied last spring to NOT include in their 2014 updated Primer that “ME/CFS is not known to be fatal.” Since there is no data to support that statement, they were finally convinced to take it out of the final version. We know people die from having this disease. However, solid data is needed to prove it.
If you or anyone else is interested in participating, please use this link to access the survey: https://redcap.is.depaul.edu/surveys/?s=DHxuYxScEn
I used to get the syndrome for a few weeks to a few months at a time and then recover. When I over-exert, I would relapse. Then one day 7 years ago it became permanent. Maybe this remission/relapse subtype works similarly, except that the switch may be flipping over without an external trigger. That won’t surprise me since some people also develop cfs out of the blue without an apparent trigger.
I can’t remember getting a sudden sickness, or even knowing what caused it. I did have glandular fever as a teenager, but I recovered pretty quickly. I remember asking my mother as a child why I was always sick, always catching everything that went around.
I remember finding that pregnancy was when I felt my best, not as much when breastfeeding.
It didn’t click with me though until I read the list about what caused the CFS, that I had a weird symptom. I had noticed that I would get a dreadful cold once a month. I hated it. Then right on cue, a second cold appeared, so I’d have two evil colds a month. I was frustrated with this so much that I marked the days I was sick on the calendar. Then I noticed that it was always pre-menstrually I’d have the first cold, and right slap bang in the centre about the time of ovulation.
This was such a frequent event that we used to call it my pre menstrual flu. The pattern disappeared thankfully a few years ago.
Anyway my fatigue is just a constant. There seems to be no relapses, no large ups and downs, just small ones directly related to how much I do. Actually I get big downs that happen quickly, followed by a gradual ascent, but never a return to my previous state. I feel like my illness is just one gentle never ending decline. And I can’t do anything about it.
Still, I’m pretty happy and content with my life. I’ve learnt to let go and be grateful about all the good things, if you’ll forgive me being cliche.
I have had FM since the early 80s, after being in a car accident. Then in 2003, I contracted mononucleosis/EBV/glandular fever, which devolved into CFS. So while I used the 2003 date for my date of onset in the survey, and chose a trigger of a flu-like illness, those data only apply to the CFS part of my illness, and NOT to FM.
My primary care doctor did not recognize that I had EBV for several weeks and so did not order blood work, but rather kept treating me with so many antibiotics that I developed a total systemic yeast infection. After several months, I finally received a diagnosis of CFS. I had to leave a job that I loved because I needed 10-12 hours of sleep each night, yet could only function for about 6 hours per day.
Thirteen years later, I am not AS ill as I was back then, but still cannot tolerate stress to any degree, have sleep dysfunctions, unremitting pain with muscle contraction, temperature dysregulation, periodic swollen glands and sore throat, headache, heart rate and blood pressure inconsistency, dizziness, a constant general feeling of unwellness, IBS, and several other symptoms. I often wonder whether, because of Epstein-Barr virus being my trigger, I will someday develop leukemia or lymphoma, the treatment for which would probably kill me faster than the disease would.
It’s heartening that there is more research being conducted, generating data that physicians might actually pay attention to. I just hope and pray that effective treatments will come of it, so that we all might have some hope of recovery one day.
Christina did You get the first symptoms one year after the accident? I got sick one year after my father died, had RLS with no suitable medication for 3 years and a new very annoying new boss and argued with my partner, and I tried to hold myself together for my boy. There are many triggers but I have read and heard that often FM/CFS start one year after a trauma.
Just look at the variation of comments about aetiology.
When you have a homeostatic imbalance the variation in symptoms and “remission” is extremely wide.
Attempting to define or delineate an illness on the basis of symptomatology is unreliable.
Descriptions of onset from historical self report is unreliable.
The concept of remission is vague.
When we have biochemical markers or better parameters we will be able to delineate subgroups.
Dr. Ian,
You are a voice of reason… Thank you. Kitty.
If you expand on this survey at some point, it might be very interesting to include questions about symptoms, comorbidities and maybe family history. Relapsing-remitting course is something found in most auto-immune diseases.
As someone with a co-morbid autoimmune disease and a family history full of autoimmunity I have always wondered about this. I know Fluge and Mella have found a high incidence of family autoimmune diseases, it would be interesting to know whether in this case there is a meaningful subset that correlates to symptoms and history.
Thanks Kyla…good ideas 🙂
I can’t wait until I have a remission. If I have a couple of good days in a week I am thrilled. I’ve tried gluten free, dairy free, all organic no processed foods. Turmeric, ginger, cinnamon, magnesium, vit B12, vit D supplements..and yes I can feel better, but not long term. I do gentle yoga, I meditate, walk as much as possible but I do have too say, if I overdo in anyway, I will have a huge flareup in both pain and fatigue. I pray someday soon for a long remission.
I started suffering from CFS 25 years ago. After change of location and huge lifestyle changes I am in GREAT health most of the time for 3 years now – but it seems most sufferers (and their families!) are not willing (and able – or convinced enough?) to make a complete lifestyle change. A lifestyle of chemical avoidance is isolating – but I can do my job over the Internet and it is wonderful to experience great health again.
Congratulations Nic. Can you say what lifestyle changes you’ve made?
Sure, Cort! I live in South Africa, so I have started a blog on the topic in my mothertongue, “Afrikaans” – because there is very little info on the topic in my language. Good news: I see you can right-click in a page on the blog and a right-click menu will open up that gives you the option “Translate in English”: This seems to work well for most part. The website address is http://cfs101.blogspot.com/
Though people have asked for advice, no-one seem committed enough to truly make the changes that I have made, so I have not updated the blog very regularly: Most people just seem to wait for that magical pill. If more people are interested – and actually make the changes, just let me know and I will be happy to update the blog with any info that might still be left out.
I keep my lifestyle and diet very simple, so I can easily trace any negative or positive change in my health to a possible course.
Regards,
Nic (Nicolaas Roos, Margate, KZN, South Afica)
Alas right clicking doesn’t work for me to get to a translation of your pages . I’d love to hear what is working for you Nic.
Suella
Could it be the browser? I’m using Google Chrome. I get the “Translate to English” option just beneath the “Save as..” and “Print..” options. Sometimes a have to wait a while and right-click a second time before the option becomes available.
I find I am able to make some lifestyle changes but haven’t been able to recognize others I should be addressing. However, I’ve just started doing a two week activity and symptom logging course which has allowed me to see what time of day I should be doing certain activities to be efficient in the use of my limited energies. And when I need to do my short flat rests in a darkened room and/or meditation.
After doing a couple of logging courses and learning from them, I have resisted the logging of activities and symptoms for some time. I felt I had my moderate to mild ME pretty well sussed and the way I used my daily energies was working..
Not so. Not so at all. I should realize that for me lifestyle changes can always be tweaked and usually are the answer to giving me more energy, both cognitively and physically..
I’m able to get support in my lifestyle and other changes through the courses of Bruce Campbell at http://www.cfidsselfhelp.org
If you are interested in his free logging forms they are here:
http://www.cfidsselfhelp.org/library/type/log_forms_worksheets
And articles in the free library are here:
http://www.cfidsselfhelp.org/library
Has anyone looked at this explanation of remissions?
This makes sense to me from my personal experience of my only remission.
It is a chapter by a patient in ME doctor Dr. Sarah Myhill’s book.
http://drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we_get_into_and_how_we_get_out_of_CFS
My experience was that for the first time that I felt I was CFS/ME free, but only for about 3 months. And then I got another virus…
Multiple Flat rests and home made yoghurt seemed to be the helps to become CFS/ME free for me. But I follow the courses and information from Bruce Campbell’s CFIDSSelfhelp.org course which has taken me from 25 – felling only tied, but well enough to ride rhorse for an hour or two multiple times in one week.
sudden onset after bronchitis and penicillin injection, bedridden about 6 months. gradual improvement to maybe 50% of pre illness activity first 10 years,cyclical but never a true remission, it was always there just under the surface ready to erupt at any moment. After 10 yrs, major crash, bedridden, many more neurological type symptons rather than flu like. downhill Wittenberg getting back to pre flare activities after a flare now. housebound but not bed bound with maybe 2 hrs energy a day over the day.
to me a remission would be able to plant a garden or walk mire than a few yards or stand in place more than 3 mins. so far no such luck.
stupid auto correct, Pittsburgh, no idea what tgat was supposed to be
Someone mentioned mold. It just dawned on me that when I moved into a historic 200+ year old farmhouse, I found the cellar was was covered in black mold. Two dehumidifiers dried it up a bit but it’s still there. A year later is when I started to feel unwell. Fortunately I’ll be moving out soon, but I feel as though I moved in as a healthy 50-year-old, but am moving out as a weak and chronically ill 60-year-old.
I don’t know if my survey results went through or not because of inability to down dates. I have never met anyone that has had this as long as I have,,42 years. Every virus has found me, swine flu, shingles, encephalitis since initial ebv at age 19. I am now 61, chronic and with severe OA, joint damage, had some remissions, one during middle trimester of first pregnancy. ME./CFS chemical ssensitivities, migraines, had endometriosis. I suspect I am hypothyroid but test normal. PPlease consider me for any upcoming studies. Ive lost all hope of a cure. Eat a whole diet, takle 100 supplements, no diabetes or heart issues yet. 60 lb. Weightgain while on Cymbalta.
I was diagnosed with FM in 2001, and my trigger was a work-related injury. That was 15 years ago, and the diagnoses have been piling on since then. I joke that one day I’ll have an entire alphabet of medical conditions.
I’ve never been diagnosed with ME/CFS, although overwhelming fatigue has been one of my major symptoms. Up until recently, I’ve had the same rheumatologist, and he was rather unimaginative regarding examination and treatment. Hopefully, the new doctor I begin seeing next week will be better, as I’ve never really had a program of treatment, just a haphazard “let’s try this…see you in six months” approach.
I don’t ever experience anything I would call “remission.” While I do have days when I can tolerate the pain and fatigue to manage self-care, chores, and errands, I end up paying for those days in delayed reaction symptoms. Flares—days where even showering is impossible—occur if I’m overly stressed, when I’m sleep-deprived, when the barometric pressure changes, when it’s excessively humid, and if I’m cold. They’ve lasted from a single day to longer than a week.
Other than FM, I’ve been diagnosed with Chronic Myofascial Pain, IBS, TMJ, Chronic Migraine, Sjogren’s, Raynaud’s, Excessive Daytime Sleepiness, Chronic Insomnia, Major Depressive Disorder, Generalized Anxiety Disorder, and Seasonal Affective Disorder. Thankfully, I haven’t been diagnosed with Lack of a Sense of Humor. 🙂
Hope this helps
When I was 13-27 I would suffer moderate discomfort and fatigue between ‘flares,’ then every 3-6 months it would sucker punch me.
After 28 – the ‘in-between’/ healthier phases became shorter and shorter, until I ONLY live in a state of ”flare.’ I am now 48 … and there are no ‘remissions,’ and there have been none for 20 years – it’s the reason I filled out BOTH surveys.
In relation to how many times the up/down pattern has recurred, it might be interesting to cross-reference that with the number of years the person has had the condition. Perhaps the number of occurrences tends to go up with the # of years folks have had it, with CFS/ME. And maybe that will show more of a general pattern for relapsing/remitting CFS?
Didn’t have time to read all the comments — sorry if you treated this already.
My remissions are random. I can’t create/control them by anything I do or don’t do, eat/don’t eat/take/don’t take. Rest even won’t lift a relapse. But in a remission I can go for long walks and not get any PEM.
I eat the same foods all the time and live the same remote rural lifestyle, and can not find triggers for either relapse or remission.
Each relapse feels just like the initial illness which began suddenly. I also can time it almost to the minute.
Flu-like but atypical for flu. No fever or respiratory issues. Flu-like malaise, and vague GI symptoms (loss of appetite, loose stools though not diarrhea, nausea) with some vague neurological symptoms (shakiness, twitchy muscles,slight twinges over right eye) and deep exhaustion. Though no sore throat or fever -ever.
All medical tests were “normal”. ME/CFS was assumed by a GP late summer 2018, 5 months after inital event, though at the time it was “wait and see” and at that stage post-viral syndrome was suggested.
Each remission I feel totally and 100% normal like nothing was ever wrong with me.
I can’t see it would be something like SIBO with random complete absence of symptoms for periods of time.
Thanks Sylvia,
How often do your remissions occur and how long do they last?
My initial illness only lasted 4 days before I was able to go back to work. I was still able to walk a long distance but would suddenly need to lie down. Then two months later my glands swelled up and my liver swelled and I was told that I had glandular fever. I could not work for 11 weeks and spent most of that time lying down. Gradually I improved and was able to work and managed to learn scuba diving but if I did too much symptoms would get the better of me. Every few years I would have a bad patch of health that lasted months which I would gradually improve from. In 2003 I got shingles and health deteriorated badly I had young children and was not able to rest enough to get over the symptoms. I gradually improved and found I had 4 month periods with little to no symptoms. Doing something cardio, catching a virus or stress would make me symptomatic again. When I come good its like I test my limit and find I have got away with what I have done. This enables me to do a bit more and if it does not give me symptoms I keep checking my new limit. It is like what ever has been causing the problem has disappeared. I no longer get PEM so I confidently let myself do things. I know though if I do too much I will be back to square one as this is what has happened in the past so I am still careful and pace. I also find that my symptoms fluctuate each day. I can have periods of the day with very little symptoms and can get away with doing things and other times where I need to be very careful. It feels like my metabolism is either working well or its not. Glad you have done a survey about this. Happy to provide more information if anyone is interested.
Hi There,
I was wondering if you had any specific findings from this survey? I have periods where I get so well I think I’m ‘cured’ then periods of relapse. I can’t figure out from all the literature whether this is a normal or rare sub group.
Thank you.
Hayley – I am so with you on this. This is my first “relapse”, I had a 15 to 20 month bout in 2015/2016, then a 5 yr respite, then it came back much worse 15 months ago and I’m still in the midst of it
Thank you Cort for this survey , I can relate to this form of relapsing/remitting ME. Thanks again for your hard work!