Do People Really Recover From ME/CFS and/or Fibromyalgia? An Inquiry - Dan Neuffer

[Jesse W]

I have had ME/CFS for 18 years with many relapses and remissioms. My longest remission lasted 4 years. The hardest thing for me has been to accept the unpredictability of these illness. I have had to learn to expect neither an occurrence nor an abatement of symptoms to last forever or for any known amount of time.

 

[Seeksassy]

(I formatted this blog - and added it to the Forums and Dan wrote it - Cort)​

By Dan Neuffer

The Recovery Question

There is much information out there on how to diagnose Fibromyalgia Syndrome (FMS) or Chronic Fatigue Syndrome (CFS) (also described as Myalgic Encephalomyelitis or ME). And whilst a diagnosis can be elusive for many people suffering with this illness, there is certainly no doubt that they are very ill, even if their doctors, family or friends don’t always share this certainty.

[fright]View attachment 633 [/fright]But there is little talk about recovery; how to identify if you have fully recovered from Fibromyalgia or ME/CFS. Why? Possibly because many people including doctors may believe that recovery isn’t possible – or at least not for them or for their patients. After my 4th year of trying to get well again, I certainly myself came to that conclusion and had given up hope.

But in recent years, numerous recovery stories have popped up on the internet. (See Recovery Stories section on Health Rising and CFS Unravelled). However some people believe, probably based on their hard-won experience, that recovery from ME/CFS or fibromyalgia is impossible. In other words, if you recovered from it you never had it in the first place.

Having recovered myself after over 6 years of illness, which at times was very severe, I understand but no longer share this belief. Since my recovery I have spoken with many other people that recovered, some who did so even after decades of illness which has strengthened my belief in recovery beyond my own experience. But of course, not everyone is easily convinced by hearing recovery stories, and for several reasons.

• I suspect that many “recoveries” may be little more than symptom suppression and management
• It’s not exactly clear what “recovery” is
• That recovery can occur in a wide variety of ways is confusing

Recovery vs Cure vs Remission

The dictionary states that

• A cure is the end of a medical condition; the substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps end a person's sufferings. It may also refer to the state of being healed, or cured.
• A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

So cure is an “end” of a medical condition which implies that there is no chance of the patient relapsing. That raises the question of whether there are cures for chronic illnesses? In fact most if not all chronic illnesses are managed not cured. Cancer, heart disease, depression, MS, ALD, AIDS, diabetes, the list is nearly endless – can be managed by medication, lifestyle, diet, etc. – but are rarely cured. That suggests that in general with regard to chronic illnesses, the word cure may a misnomer.

Perhaps the word cure also suggests a single treatment or therapy that works the same for everyone with little room for tailoring treatment. Since no such “cure” is known for Fibromyalgia and Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) perhaps remission is more appropriate term to use for those who have regained their health. But that word suggests that their period of wellness may be temporary, that at some point they will or may have a chance of getting sick again. We know this is true, of course, and a survey on Health Rising supports this, but such negative connotations don’t necessarily serve those that regained their health, nor do they set up great expectations for those still working to restore their health.

That’s why my preference is for the word recovery. A recovery is a restoration of health or functioning and can be either partial or full. It goes beyond stopping the underlying disease mechanism – which a cure does. Even people who get “cured” from a disease, still need to make a recovery.

What Constitutes a Recovery From Fibromyalgia/ME/CFS?

I have come across people who explain how they take dozens of supplements, regular IV infusions, hormone treatment and so on, in order functioning fairly normally again. But I ask, if you're managing or reducing your symptoms using a range of medications, hormones and supplements to something that resembles normal health – is that recovery? I would say no. I would say those people are managing their illness using orthomolecular or some other branch of medicine but they are not recovered.

[fleft] View attachment 636 [/fleft]Some people are able to very significantly reduce their symptoms by limiting their physical and mental activity. By avoiding stress, eating the “perfect diet” and staying inside a limited physical activity envelope their symptoms are much reduced or sometimes gone. They feel healthy. Others can participate in most aspects of life – except for rigorous exercise. I think these are cases of improvement – sometimes very significant improvement - but not recovery.

To me, a recovery means that your body’s function is restored enough to allow it to cope with the normal activities associated with full-time work and an active lifestyle that includes doing social activities and exercise, as well as eating a normal diet (normal not meaning good!). Even here, though, there are levels.

I remember when I first felt recovered. My flare ups had ceased and I no longer had pain, fever, insomnia, gut dysfunction or brain fog. But other symptoms were trickier and more difficult to quantify. Whilst I had thought my energy and immune function had returned to normal, a year later, I noticed that my energy levels were still increasing and that my health felt even more robust.

So although I previously thought I had fully recovered, I clearly had not. My reference point regarding what was “normal” health, had clearly shifted during my years with ME/CFS/Fibromyalgia.

In my mind recovery of health has to be about your body functioning well and giving you access to the experience of good health without being reliant on external powerful drugs or severe lifestyle restrictions.

Does Recovery Occur?

Given that definition of recovery – have people fully recovered from this illness? The recovery stories suggest yes and while recovery may not be common it may be happen more often than we think. I have interviewed over 40 people that recovered and met around 200 personally. Given the lack of study in this area, the percentage of people who make full recoveries is impossible to say.

[fright]View attachment 634 [/fright]It’s at this point that some skepticism naturally emerges. I was skeptical myself, pathologically so in my later years of suffering with ME/CFS and Fibromyalgia. I, too, had unsuccessfully tried many of the things people had used to recover from. (In fact, some of those things later worked for me.) Anyone who has experienced a bleeding wallet thanks to never-ending tests, treatments and empty promises will inevitably adopt a bit of healthy skepticism.

For people that have tried many things, including the things those other people used to get well, but despite all that have still not recovered, I understand the frustration. I understand why they might assert that “They didn’t have what I have”. For most of us, most symptom treatments simply do not lead to recovery.

To Have Had ME/CFS/FM or ME or Not?

But can those people go further and say the people who recovered didn’t have ME/CFS/FM or ME?

When people make a full recovery and people say that they never had the illness or had something else, that is too far in my view. There are undoubtedly varying degrees of illness and different secondary dysfunctions that form the syndrome, but suggesting that someone didn’t have the illness based on the fact they got their health back, does not seem very scientific.

If you look at the symptoms and experience of many people that claim recovery, you can see that many were significantly ill. Almost all, for instance, had to quit working. Some became bedridden and many became largely homebound. Many spent years searching for something that might help. Some were ill for decades.

[fleft]View attachment 635 [/fleft]The different treatments used can raise questions as well. People, after all, have recovered in all sorts of ways. I think most people would agree that a person who recovered using antivirals had ME/CFS or ME. But what if “less powerful” treatments worked? What if supplements and herbs in conjunction with pacing made the difference? What if mind/body work played a large role? Or if diet or strict pacing did? Or a combination of “softer” treatments did? People diagnosed with ME/CFS/FM who have had very significant illness have recovered using all these approaches. Does the type of treatment used determine what kind of illness someone had?

Then there are people’s “accidental” recoveries: people who don’t know WHY they recovered. Can you recover from a serious chronic illness without knowing why? My experience and discussions with people says yes. I imagine we looked hard enough in the literature or talked to a doctor you would find cases of people who had recovered from many chronic illnesses where no one was exactly sure why.

Did all these people that claim to have recovered from “ME” or “ME/CFS” or “Fibromyalgia” actually have it? I think it makes sense to look at the details. Both fatigue and chronic pain are often used to define the illness, but we know there are other reasons for such symptoms, even if they are chronic. But I believe that people who had the RANGE of symptoms we associate with this SYNDROME, who saw doctors and tried to get well and whose illness persisted, I believe that they truly had the illness - as we know it now.

So many of us have been frustrated by the need to ‘prove’ our invisible illness with the medical community, our family and our friends. It’s ironic that some of those same people now have to prove they had ME/CFS/FM at all – simply because they got well.

• Dan's Recovery Story
• Recovery Stories on Health Rising (now open to unregistered members)
• Dan's CFS Unravelled Website
• 75-80% Recovered? Post Your Recovery Story Here.

I have a cousin who had to quit medical school as a young man due to cfs, and was very sick for probably 8 years, and then had what seemed a spontaneous full recovery about 8 years ago. I've also heard, anecdotally, of others with CFS who have recovered. I know more fms people but don't know of any who have fully recovered, so I believe recovery is possible for CFS but not FM.

 

[Seeksassy]

I have had ME/CFS for 18 years with many relapses and remissioms. My longest remission lasted 4 years. The hardest thing for me has been to accept the unpredictability of these illness. I have had to learn to expect neither an occurrence nor an abatement of symptoms to last forever or for any known amount of time.

Before my CFS dx I'd had FM for 14 yrs, and my experience was the same as your's. Since CFS in 2010 it's all been downhill.

 

[Phillida Bunkle]

I found Dan's article thoughtful and humane. It acknowledges the reality of suffering and does not belittle the horror of this illness. I find his thinking about 'recovery' clear and honest. I really appreciate the distress of those who have tried everything and are still so ill. Those of us who have recovered are not trying to mislead or put down those who are still struggling.
But it is very important that recovered people stay with and continue to support the ME community because they both know the terrible nature the illness AND also have more energy to offer support. I believe I have recovered, AND I want to continue to try and support those who have not. It is important that the recovered do not abandon the issue. Too often those who recover just want to put it all behind them and never go there or think about it again. When we do that we leave the effort to wonderful people like Cort to battle on despite his ongoing illness.

Sometimes people who recover come up with some really annoying 'explanation' of how they brought about their recovery. We should always tell recovery stories cautiously as how they occurred can only ever be tentative and the possibilities of relapse and the anxiety remain with us, but I believe they are more common than is frequently recognised, and if we all continued to support the cause our lobbying would be that much stronger.

 

[Strike me lucky]

On martin lerners scale i would say i was a 4 out of 10, struggling to work part time. When not at work i just lay in bed. Caffeine and the odd sudafed got me through work but its what i had to do to support my family as well as some money to try different treatments .

Antivirals did take me to a 9, but i have been up and down between 6 and 8 mostly. This year its been a 6 after shingles infection. If i stop antivirals i crash within weeks. At this stage for me i believe the immune dysfunction needs to be sorted before i will be able to stop antivirals. Maybe several years more on antivirals will eventually eliminate the viruses .

I havent come across anyone who has been cured , remissions yes. Many seem to improve but probably more to do with adaption. Many learn to pace well, watch what they eat and try to get good sleep but if they go outside this energy envelope than they crash.

Myself I feel like im in a constant push crash while trying to work part time, waiting for the day my kids become independent and I can cut back further with work or stop altogether some how . Drastically down size. Thats the current plan.

 

[andreamarie]

I think remission is possible if CFS is an autoimmune disease. I suspect in my case it is considering the profile I have: Crohn's disease (in a forty year remission), interstitial cystitis (in a twenty year remission) Sjogren's Syndrome (80% improved.) And then I got CFS after having two diseases frequently seen in CFS.

Concerning the Crohn's: There were only two medications available when I got it. One didn't work and I was allergic to the other. I was critically ill at one point with no meds. Except for limiting fiber and excluding dairy I was not on a special diet. I was very anxious and terrified I'd die(I had massive hemorrhage.) No one knows why I got better; I was back at work and leading a full social life. But I am still considered in remission and followed closely.
I was dx with fibro many years before I got CFS but the first year it was very severe. It simply got better. I still have all the tender points and hit the ceiling when my rheumy pokes them. I did a lot of things the first year I had CFS but did not continue with most of them.
I have no idea why the IC went into remission. I suspect it was because as I was approaching menopause the symptoms decreased. When I hit menopause I went into remission. But I still have microscopic hematuria on occasion. I stopped all the treatments and one med. I take one supplement still because I'm superstitious.
I've had CFS for twenty one years. I'm now having a chronic pain problem that accompanied i.c. But since it's common in Sjogren's I'm not sure what illness it belongs to.
I don't think I've recovered from any of the above illness's because non have a cure.
I've tried many things for my CFS and had one short remission after the first nine months. It was a true remission: I flew to a villa in Italy, spent a week in Florence and outdid the healthy people with me. It was shortlived. I continued with the same program but crashed after two months.
I'm better than I was twenty one years ago but I have no idea why. I'm not housebound but I'm very limited. I flare when the seasons change; that is happening now. This is seen with autoimmune diseases.
As someone mentioned, it's hard for me to read recovery stories. I've tried so many things that I'm emotionally exhausted. I do think it's wonderful that others do get better but I think it's difficult to distinguish a true remission from recovery.

 

[Barbara Berk]

I use to have hope about recovery, but unless God does a miracle I don't know if I'll ever be well. If anything I have worsened in spite of taking antiviral medication, anti-fungal, and a host of supplements by my functional medicine doctor who utilizes applied kinesiology, and have altered my diet.
I have HHV-6 infection and I believe I have the inherited type. I know my mother had CFS and probably her aunt had it as well. From what I've read about HHV-6 chromosomes have been altered when you get the inherited form of the disease.
I have had signs of CFS my entire life. Always ill as a child, immune system was very impaired, basically had all the classic signs of CFS. I didn't become overcome by it, however, until 2006 when I was 48.
Since 2006, I feel like I'm even worsening instead of getting better. I seem to tire more easily. I have to be very careful about activity level as I can relapse way too easily. As long as I don't push myself, I can live a status quo kind of existence, but whenever circumstances necessitate that I push myself, then I majorly deteriorate. Depending on the situation and what exactly caused the relapse I have often been stuck in a several month relapse -- the longest one being about 9 months. But I also experience shorter durations of relapse too--lasting just days or weeks.
I'm able to take care of myself mostly. I'm able to go grocery shopping once a week if needed, bathe and do personal grooming (although not as often as before), and I'm able most of the time to not have to be in bed. Exercise ability is very limited and usually causes relapse. Mental activity too can cause a relapse. Severe fatigue and severe brain fog are my key problems.
My question is whether or not the people who have recovered have had the inherited HHV-6 infection? I would like to know about those recoveries and how they did it. I don't have much faith in people's recovery when they have not had symptoms their entire life or do not have this inherited HHV-6 infection.

 

[Vicki]

I believe that syndromes (which are a collection of symptoms) may vary from person to person. We are all unique and genes, upbringing, lifestyle, work, social lives, mental/physical activity, environment, community and even religious or spiritual outlook affect our health.

A hundred people with exactly the same symptoms and diagnosis (MEF? CFS? FM?)might improve/recover via a hundred different treatments. Why do some people die from cancer and some people on the same treatment, live (or go into remission)? Why do some patients seemingly recover from severe and/or 'terminal' illnesses full stop?

There are too many factors in the equation to form a 'blanket' diagnosis or prognosis. My own FM/MCS (and probably CFS my Doctor concedes) are interwoven between dietary intolerances, metabolic syndrome, inherited health conditions and so on. I worked in what I call a 'toxic' environment. Old buildings, dust, mould?, negative emotions, inequality, harassment, long hours, insufficient rest, prejudice, lack of holidays or break time, insufficient managerial support (at times).

When I belonged to the Phoenix Rising Forum, I was staggered at the number of members who attributed every little rash or symptom to ME/CFS/FM. I felt like saying 'get real'. We all have some sort of health issues in our lifetime. Even 'healthy' people get the occasional rash, itch, cold, flu, gastro, sprain or pain & so on. Man was not made to be sedentary. So poor lifestyle choices will inevitably lead to poor health. Just because you have a rash, that doesn't make it a ME/CFS/FM symptom, even if you never had a rash prior to the ME, CFS or FM diagnosis. I use the abbreviation ME/CFS/FM merely because they have overlapping symptoms, not because they are the same thing.

I know for certain that I improve dramatically in pain severity by deleting all grains, dairy products......processed foods, additives, preservatives and buying 100% organic produce. But the fact remains that I do have inherited severe Hypertrophic Cardiomyopathy inherited from my Mother's side of the family. Sure, the thickened heart wall and flow of blood can be improved by surgery (as it probably will be when my quality of life deteriorates significantly). I inherited Diabetes from my Father's side of the family but am currently (through diet & exercise & other factors) in remission.

I currently do not have Diabetes. Am I cured? I think not. I am just one of those very rare people who is in remission (after 3+ years of firm diagnosis/testing). But the fact remains that if I drop my lifestyle, exercise and diet, it is inevitable that I will lose that status. It's in the genes. There is no escaping that. I certainly didn't, and currently don't, have the diet and lifestyle of my paternal female ancestors who had Diabetes and died relatively young.

I had a very stressful job for the last 16 years of my working life. But was it stressful, because of the work load, or was I stressed because I was in continual pain/devoid of deep restful restorative sleep and couldn't COPE with the workload? Was the pain worse because I have severe disc disease unresolved from my teenage Schueuermann's disease condition. Was I stressed because I was a perfectionist and drove myself too hard?

Stress shaped my working life. Or did my lifestyle/genes create my Stress? Did I have some sort of Virus which was the cause of a flu-like condition and severe back pain (well, the pain was mainly spinal that I remember) for 2 weeks in 1980, ME/CFS/FM? Was that the Beginning (of the deterioration)?

I have (on the surface) a reasonable lifestyle, but that is merely because I avoid anything that might make my symptoms and pain flare up to the intolerable level. Sometimes my symptoms flare up (despite careful attention to diet, exercise & lifestyle). I can't work, socialise, travel for any length of time or do what 'normal' active working people with families/hobbies/sports do, but as my health has deteriorated over 30+ years, I am quite 'acclimatised' to my current lifestyle. I was always shy and a loner as a small child, so in many ways I don't really miss my social life. I quite enjoy my own company. I am often alone, but rarely lonely (like other ICI sufferers).

I am fortunate in that my health did not deteriorate in a short space of time. I was not 'struck down' after a virus, infection, traumatic event. Even after the 2 weeks health issues in 1980, I went on to have a relatively 'normal' life for some years, but embarked on a long period of treatment with a Chiropractor every time my spine/hips or other limb's pain affected my seemingly 'normal' life. Even as a child I was painfully thin and looked anorexic (and probably had some sort of malabsorption issues because my Mother give me all the same home grown healthy diet that the rest of the family ate).

I know for 100% certainty that I will never live a 'normal' life for the simple reason that I have inherited and suffer from health conditions that stem from both my maternal and paternal ancestors (as well as FM and CFS) and childhood.

I suspect the people who are 100% cured have not totally gone back to their (possible) unhealthy, inactive lifestyle they had before getting ill. Not every ME/CFS/FM patient had a high lifestyle and successful career before they got ill. I wouldn't mind betting their 'cured' status includes better diet, better exercise, happier lifestyle and even a possible change of career. I bet those 'cured', or in remission, are now adopting better life choices.

I dismiss the words 'cured', 'in remission'.

Forget comparing remission from symptoms, and start comparing the way the 'cured' are currently living (compared to their former selves). I wouldn't mind betting they eat better to start with. I wouldn't mind betting they are in tune with their body functions and listen to what their mind and body speaks. I'm suggesting if they have any negative sensation or symptom, they subconsciously slow down for a few minutes, hours or couple of days.

I wouldn't mind betting they are not the same person as they were prior to ME/CFS/FM.

I suggest that they are a completely different person.

 

[Jenny Horner]

"I don't believe it's possible to say that people with ME, ME/CFS and CFS have different diseases. "

They don't necessarily have different diseases, but subsets of the same one in my opinion. And of course one can recover, the body is remarkable. But recovery to me is complete normalcy...100% return to normal function and I have only met and been witness to one person in my personal life who has said that. I think that if there is a genetic tendency for the body to react to infection as ours/mine does, than the body will do that again in the future when presented with the same sort of circumstances. That is why complete recovery to me seems so rare in my opinion.

Yes I wanted a subgroup option.

Functional recovery is probably usually long term remission with some vulnerability to get ill again again, or using effective strategies to stay well. I've been up to 95% and back to bedbound again. Very hard in one way to rebuild your life then have it stolen again but I do have confidence that I can get back to 95% maybe 100%.

 

[sulou]

"I don't believe it's possible to say that people with ME, ME/CFS and CFS have different diseases. "

They don't necessarily have different diseases, but subsets of the same one in my opinion. And of course one can recover, the body is remarkable. But recovery to me is complete normalcy...100% return to normal function and I have only met and been witness to one person in my personal life who has said that. I think that if there is a genetic tendency for the body to react to infection as ours/mine does, than the body will do that again in the future when presented with the same sort of circumstances. That is why complete recovery to me seems so rare in my opinion.

 

[sulou]

I think the biggest problem with the recovery stories right now is that they're all over the map. The real question for all of us is what works for us. In order for any one to have a shot at answering that way we need to find people with similar kinds of illnesses. For that we need details - type of onset/symptoms/lab test results/treatments used that didn't work/ treatments that did work......We have some of those details in the recovery story program but they're only showing up for some stories.

Ideally we need a system where we can find our match and see what worked or didn't work for them.

Otherwise there are a lot of different directions to go and that's obviously confusing, time consuming and expensive to try...It's a bit overwhelming - particularly for people who are already battling overwhelm in different areas.

Still they can provide clues that can help some people.

Until I was 40 I had poor health and caught infections easily. Then I caught flu and it seemed to set off FM/CFS/ME - whatever - and a diagnosis of Rheumatoid Arthritis. After many years my joints seemed to settle down to just stiffness and aching which i just about manage with pacing, and careful diet. My diagnosis was changed to FM with osteoarthritis and IBS. At the age of 68 I was diagnosed with Fabry's Disease after a scan revealed I had heart abnormalities consistent with strain. ( Ordinary life did feel like pushing a boulder uphill.)
Fabry's Disease is due to an X linked genetic mutation.Women have 2 X chromosomes and because the mutation is on the X chromosome, women can have a milder version. They will have undamaged sections on their other X - whereas men only have one X. The disease can have such different symptoms ,and severity of symptoms ,even men don't get diagnosed.
Because women have this "backup" feature in their genes, many diseases that are more obvious in men - exist in women, but go undetected. There can also be hundreds of variable mutations in the same gene. Some will be inherited and some will be new in that individual. There must be few people who are 100% healthy!
Do whatever helps with the problems you have. Be hopeful that you can make a difference, and where you cannot medical science might be getting there.

 

[Cort]

I have had ME/CFS for 18 years with many relapses and remissioms. My longest remission lasted 4 years. The hardest thing for me has been to accept the unpredictability of these illness. I have had to learn to expect neither an occurrence nor an abatement of symptoms to last forever or for any known amount of time.

Can you tell either what pushes you into a relapse or helps you get into a remission? Or is it all a mystery?

 

[Cort]

I found Dan's article thoughtful and humane. It acknowledges the reality of suffering and does not belittle the horror of this illness. I find his thinking about 'recovery' clear and honest. I really appreciate the distress of those who have tried everything and are still so ill. Those of us who have recovered are not trying to mislead or put down those who are still struggling.
But it is very important that recovered people stay with and continue to support the ME community because they both know the terrible nature the illness AND also have more energy to offer support. I believe I have recovered, AND I want to continue to try and support those who have not. It is important that the recovered do not abandon the issue. Too often those who recover just want to put it all behind them and never go there or think about it again. When we do that we leave the effort to wonderful people like Cort to battle on despite his ongoing illness.

Sometimes people who recover come up with some really annoying 'explanation' of how they brought about their recovery. We should always tell recovery stories cautiously as how they occurred can only ever be tentative and the possibilities of relapse and the anxiety remain with us, but I believe they are more common than is frequently recognised, and if we all continued to support the cause our lobbying would be that much stronger.

What a wonderful post Phillida! Thank you very much

 

[Cort]

On martin lerners scale i would say i was a 4 out of 10, struggling to work part time. When not at work i just lay in bed. Caffeine and the odd sudafed got me through work but its what i had to do to support my family as well as some money to try different treatments .

Antivirals did take me to a 9, but i have been up and down between 6 and 8 mostly. This year its been a 6 after shingles infection. If i stop antivirals i crash within weeks. At this stage for me i believe the immune dysfunction needs to be sorted before i will be able to stop antivirals. Maybe several years more on antivirals will eventually eliminate the viruses .

I havent come across anyone who has been cured , remissions yes. Many seem to improve but probably more to do with adaption. Many learn to pace well, watch what they eat and try to get good sleep but if they go outside this energy envelope than they crash.

Myself I feel like im in a constant push crash while trying to work part time, waiting for the day my kids become independent and I can cut back further with work or stop altogether some how . Drastically down size. Thats the current plan.

Really interesting...I assume that you're on antiherpesvirus antivirals (?). I wonder if CMX001 might just really knock them down for you - if, hopefully, it gets FDA approved.

 

[Cort]

I use to have hope about recovery, but unless God does a miracle I don't know if I'll ever be well. If anything I have worsened in spite of taking antiviral medication, anti-fungal, and a host of supplements by my functional medicine doctor who utilizes applied kinesiology, and have altered my diet.
I have HHV-6 infection and I believe I have the inherited type. I know my mother had CFS and probably her aunt had it as well. From what I've read about HHV-6 chromosomes have been altered when you get the inherited form of the disease.
I have had signs of CFS my entire life. Always ill as a child, immune system was very impaired, basically had all the classic signs of CFS. I didn't become overcome by it, however, until 2006 when I was 48.
Since 2006, I feel like I'm even worsening instead of getting better. I seem to tire more easily. I have to be very careful about activity level as I can relapse way too easily. As long as I don't push myself, I can live a status quo kind of existence, but whenever circumstances necessitate that I push myself, then I majorly deteriorate. Depending on the situation and what exactly caused the relapse I have often been stuck in a several month relapse -- the longest one being about 9 months. But I also experience shorter durations of relapse too--lasting just days or weeks.
I'm able to take care of myself mostly. I'm able to go grocery shopping once a week if needed, bathe and do personal grooming (although not as often as before), and I'm able most of the time to not have to be in bed. Exercise ability is very limited and usually causes relapse. Mental activity too can cause a relapse. Severe fatigue and severe brain fog are my key problems.
My question is whether or not the people who have recovered have had the inherited HHV-6 infection? I would like to know about those recoveries and how they did it. I don't have much faith in people's recovery when they have not had symptoms their entire life or do not have this inherited HHV-6 infection.

Have you contacted the HHV-6 Foundation about other things to do for the inherited form? I don't know if there is anything to do with it but as I remember they are very interested in it. I wonder if they would have any ideas (?)

 

[Snookum96]

Until there is a bio marker for diagnoses I will never feel confident that those who say they have recovered actually had this illness. I have had periods of reduced symptoms but never full remission.

I find most recovery stories insulting and think they do even further damage to those of us who are ill. Someone on PR just posted an article about a woman who cured herself using Burlesque. Seriously. That one is far-fetched but there are a lot of diet related ones too. If a story mentions a brand name of anything they used, even a vitamin, I don't buy it. I don't trust people where there is money to be made. Seems the only publicity we get is the people who were miraculously cured by using diet/supplementation/rubbing Buffalo oil on their skin.

I hate to be such a skeptic about it, but even if some of these people fully recovered using whatever they used, those kinds of stories imply to the general public that there is a cure and the rest of us just aren't trying or doing it right.

Great poll Cort!

 

[Strike me lucky]

Really interesting...I assume that you're on antiherpesvirus antivirals (?). I wonder if CMX001 might just really knock them down for you - if, hopefully, it gets FDA approved.

Being in australia it will be awhile before it would be approved here . My best chance would be if its sold online as a generic which will be awhile.

I'm thinking of doing valcyte again, currently on famvir, but have to get results of other lab work soon before i decide to go that way again.

research on cxm001 will be interesting.

 

[tatt]

I find the opposition to recovery stories irritating. Some of the stories may immediately have me thinking they had a psychiatric illness but others give me ideas about what to try. I'm in the uk - so I dont get tests for every virus going and have no idea if I have active herpes infections or most of the other things Americans are tested for. The only treatment I am offered (CBT and GET) is likely to make me worse. So my choice was be bedbound, try the "cures" or hope for a gradual improvement. I was too exhausted to do anything initially - and bed rest only allowed me to get out of bed, not out of the house.

I'm not cured but I'm now a long way from being bedbound. In Rhodes I could walk up hills better than my husband, as long as I didn't try to do it every day. Was that extra vitamin D, a lack of mould (unlikely, it was in the shower), less dust mite from tiled floors, fresh air, the healthy fresh food diet, magnesium absorbed from the seawater - if I knew I'd make a fortune. Since I don't know I try to replicate that lifestyle as much as possible. It helps. I take N-acetyl-cysteine (something I learnt about on Phoenix rising as its part of the methylation process). That helped a lot at one stage, I need to go back to a different brand of NAC.

I tell other people what helped me because I hope it will help them. If they are too tired to go on fighting I can understand that. I get the fear of making things worse. But without the changes I've made to my life and the supplements I take I think I'd be bedbound again. Can't see myself ever being well enough to climb a mountain again but I'm still hoping to have more of a life than I do now.

When a treatment is developed it will be years before there are enough clinical trials for it to be widely available. "Early adopters" may be killed or cured, I'll take the risk.

 

[Karena]

I'm not against recovery stories per se. I think people have to do what's right for them. And if something works for them, they probably should share the information on boards like this.

My earlier post about being skeptical comes from the perspective of someone who's been sick for 24 years. As others have posted, recovery is not the same as improvement. Many of us can take steps to improve how we feel and what we can do. But I personally know no one who has recovered from what I have, though I believe it's possible.

As long as people are not being taken advantage of, they should try any treatment they're comfortable with. Every person and every situation is different. However, you have to balance chasing a cure with trying to live your life. If I had the money and opportunity, I would try any drug or protocol in a snap. But I have to spend my limited resources on trying to survive.

 

[Snookum96]

I find it irritating that people assume that everyone on these forums is American. I'm Canadian and I don't get those tests either and have no idea what kind of viruses or infections I have. the only treatment I have been offered is to exercise, eat well, take stimulants and play with my niece.

Anyone claiming to have a "cure" needs to be questioned, that's what I'm saying. I will try a few things if there is some sort of consensus or research behind it. Everything I have tried so far has made me worse, including things like vitamin c that are considered harmless. the only thing that's shown improvement for me is pacing.

I'm not against recovery stories and people sharing what has worked for them, but I am against "cures", things that people claim "cured" them instantly. at times some people with cfs are so I'll and desperate they can be taken advantage of. I've been there as have many.

The problem is that the most publicized recovery stories are the miracle cures, and it makes the rest of us look lazy or apathetic if we haven't tried them.