Very severe ME

[K22]

The problem in defining severe ME is a problem for research accuracy and biobank sample collection:

1) Biobanks will never find a 'cause' because they are based on a diagnosis of fatigue of unknown origin, not doctor proven abnormal neurological/immunological signs known to occur in someone with diagnosed Myalgic Encephalomyelitis. This anomaly ruins the research pool of ME patients who need to be research, massively.

2) Diagnosing 'severe ME' with no tests, and then preceding to take blood from someone trapped at home or in bed has a number of physical and psychological causes does nothing to reduce the muddle. This again ruins the research pool of ME patients who need to be researched, considerably.

With the two factors combined, a claimed research group of 'severe ME' (such as when claiming a finding or pathogen has been found) may only be as high as 20% with the actual condition. This is because tests aren't run to make it more likely the person has 'severe ME', rather than 'severe Lyme' or 'severe nutritional deficiency' or 'severe mental health problems - all of which can legitimately be experienced as 'severe ME', as no tests are required to confirm a diagnosis of ME (via CFS, via CFS/ME criteria used in UK and the world - as they're based on unexplained long term fatigue).

Solution 1: Use as strict criteria as possible
Use ME-ICC and CC CFS criterias to filter patients - this will increase likelyhood of physical causes found in 'CFS' patients over the decades. For example, we know that biomedical findings in 'CFS' tend to be found by doctors (who are also researchers) who accept ME is 100% organic (De Meirleir, Peterson) and not by those who are trying to prove the opposite (pschy lobby) and the use of Fukuda CFS (CDC).

Solution 2: Use doctor witnessed tests for 'signs' of disease and verified abnormal test results
A diagnosis in 'severe ME' research cohorts should require a doctors lengthy medical report and physical tests demonstrating signs of neurological disease (such as proof of Autonomic Dysfunction, gait changes, cognitive dysfunction etc) and the classic immune activation signs of inflammation in blood markers (cytokines and chemokines) to produce a real pool of probable 'severe ME' patients.

This can be done. Someone bedridden can still have their autonomic nervous system tested via an ECG and a computer (heart rate variability test performed). It's not a TILT test, but it is at least a verified test and an objective measure. The same would go for a neurological exam, in which PWME (severe) can have subtle changes on. (Dulled or brisk reflexes, droopy eyelids, facial palor, eyelids twitching after extensive talking, delayed pupil response to light changes) that aren't noted in NHS UK 'CFS/ME' patients based on fatigue, but are seen in people with severe ME.

Then we can research the patients, with more confidence they are likely 'severe ME', rather than just because of their status of a tick box in a piece of research where a blood sample is analysed because a patient has ticked a box that says 'I am housebound or bedridden'.

Until people do this, to says someone has 'severe ME' means little at all and to get blood from 'them' in terms of finding causative pathogen or defect, a 'biobank' is largely pointless in terms of furthering science and treatment.

Heterogeneity wrecks ME via CFS and via very weak diagnostic criteria and calling someone 'severe' because their blood is taken because they are either bedridden or housebound.

My proposal is common sense, but much more costly, which is why no one will do it. It's much easier to stick to what hasn't worked for 40+ years.

The problem in defining severe ME is a problem for research accuracy and biobank sample collection:

1) Biobanks will never find a 'cause' because they are based on a diagnosis of fatigue of unknown origin, not doctor proven abnormal neurological/immunological signs known to occur in someone with diagnosed Myalgic Encephalomyelitis. This anomaly ruins the research pool of ME patients who need to be research, massively.

2) Diagnosing 'severe ME' with no tests, and then preceding to take blood from someone trapped at home or in bed has a number of physical and psychological causes does nothing to reduce the muddle. This again ruins the research pool of ME patients who need to be researched, considerably.

With the two factors combined, a claimed research group of 'severe ME' (such as when claiming a finding or pathogen has been found) may only be as high as 20% with the actual condition. This is because tests aren't run to make it more likely the person has 'severe ME', rather than 'severe Lyme' or 'severe nutritional deficiency' or 'severe mental health problems - all of which can legitimately be experienced as 'severe ME', as no tests are required to confirm a diagnosis of ME (via CFS, via CFS/ME criteria used in UK and the world - as they're based on unexplained long term fatigue).

Solution 1: Use as strict criteria as possible
Use ME-ICC and CC CFS criterias to filter patients - this will increase likelyhood of physical causes found in 'CFS' patients over the decades. For example, we know that biomedical findings in 'CFS' tend to be found by doctors (who are also researchers) who accept ME is 100% organic (De Meirleir, Peterson) and not by those who are trying to prove the opposite (pschy lobby) and the use of Fukuda CFS (CDC).

Solution 2: Use doctor witnessed tests for 'signs' of disease and verified abnormal test results
A diagnosis in 'severe ME' research cohorts should require a doctors lengthy medical report and physical tests demonstrating signs of neurological disease (such as proof of Autonomic Dysfunction, gait changes, cognitive dysfunction etc) and the classic immune activation signs of inflammation in blood markers (cytokines and chemokines) to produce a real pool of probable 'severe ME' patients.

This can be done. Someone bedridden can still have their autonomic nervous system tested via an ECG and a computer (heart rate variability test performed). It's not a TILT test, but it is at least a verified test and an objective measure. The same would go for a neurological exam, in which PWME (severe) can have subtle changes on. (Dulled or brisk reflexes, droopy eyelids, facial palor, eyelids twitching after extensive talking, delayed pupil response to light changes) that aren't noted in NHS UK 'CFS/ME' patients based on fatigue, but are seen in people with severe ME.

Then we can research the patients, with more confidence they are likely 'severe ME', rather than just because of their status of a tick box in a piece of research where a blood sample is analysed because a patient has ticked a box that says 'I am housebound or bedridden'.

Until people do this, to says someone has 'severe ME' means little at all and to get blood from 'them' in terms of finding causative pathogen or defect, a 'biobank' is largely pointless in terms of furthering science and treatment.

Heterogeneity wrecks ME via CFS and via very weak diagnostic criteria and calling someone 'severe' because their blood is taken because they are either bedridden or housebound.

My proposal is common sense, but much more costly, which is why no one will do it. It's much easier to stick to what hasn't worked for 40+ years.

I actually disagree in part . I think In severe m.e the unusual features such as profound concentration issues, sensitities to light, problem being upright etc become very pronounced & " tell tale "and should be quite easy to diagnose and differentiate certainly from mental health problems. I was too sick to see my consultant long but from A five minute consultation he said he could see that although I was thoroughly jarred off I didn't have MDd + my history was classic m.e too. Also the sicker I got the more every other possibility including lupus, rarer diseases & nutritional was excluded so I doubt thats not being picked up & I would bet most severe have had more testing than someone high function Ill 18 months. Lymes is a possibility as in milder cases but I do think the severe can be more relied to be obvious & genuine m.e , as in multi system disease, than someone given a uk cfs diagnosis whilst still at work with unexplained fatigue. But even if severe m.e research doesnt yield info relevant and beneficial to the less disabled community they should still be researched., just imagine if people with primary progressive MS had just ben left to it because they are a minority, unthinkable.

I do agree that more testing in homes could be done to Better define the severe m.e group scientifically & get us some solid medical literature out there on severe m.e. Heart rate variability is something I'd love explored at home & in centres such as the Burrswood private clinic in uk which specialises in m.e. somewhat. Its been very hard being severe with the average dr seemingly mystified as to what the hec has gone wrong and invariably projecting into that void their own ideas about deconditionng & rehabilitation.

 

[Bob]

Just exploring ideas...

For the sake of discussion, if we accept for a moment the hypothesis that ME is triggered by any pathogen, then I wonder if the persistence or continued activity of the triggering pathogen plays a role in the persistence or severity of the ME? For example, in my case, I've noticed that consuming lactic acid bacteria makes my current illness substantially worse (not just the symptoms, but the course of the illness and the severity of my baseline, and the number of symptoms). If lactic acid bacteria persist in my gut, then I assume that this adversely affects my illness too. Likewise, if a virus triggers somebody's illness, if the virus cannot be fully eliminated from the body, then would this affect the long term prognosis? Could it explain why viruses that are known to persist within the body are often associated with ME? And might it explain why some people have ME-like symptoms for a year or two, before going into remission? (Perhaps their illness was triggered by a virus that is relatively easy to eliminate from the body such as a flu virus?)

 

[PatJ]

Also, if I lay in dark room at night (not totally dark as all I can see is 'stars' (tiny flashing bits in my vision) and it freaks me out)

The flashing bits of light are called visual snow. The linked web site has a short video clip simulating what it's like to see with visual snow.

The term visual snow is rather limiting for the condition as there are numerous symptoms that patients experience above and beyond visual snow. Many people also see after images, vitreous floaters, entopic phenomenon, glare, halos, starbursts, trails, palinopsia, double vision, odd colors and shapes. Many sufferers also have non-visual symptoms such as fatigue, tinnitus or depersonalization and derealisation.

I've had visual snow for decades. It may be a side-effect of long-term dimenhydrinate use in my case. Or it might be from the single time I did LSD in high-school (apparently visual snow is a documented after-effect of LSD use for some people). It used to be visible only when I had my eyes closed or when in a dark room. In 2012 it increased so that now I see it all the time with eyes open or closed. (I developed tinnitus in 2012 as well.) Looking at a blue sky, white walls, or snow makes it especially noticeable.

I also often see cloud-like formations in my visual field. Sometimes the clouds swirl (pinwheel) inward or outward. Other times they drift around like a lava-lamp or plasma screen-saver. The clouds are usually white-ish or somewhat purple. They are subtle but obvious and easy to see with eyes closed or when looking at a light, flat surface.

 

[halcyon]

Looking at a blue sky, white walls, or snow makes it especially noticeable.

This is different from visual snow I believe. This is called blue field entoptic phenomenon and is caused by white blood cells passing through the capillaries in the eyes.

 

[Thomas]

This just goes to show you how unpredictable our responses to treatments are. My mother with mild ME takes this very product you linked to with great success for her IBS-D which has plagued her for decades. I, on the other hand, develop hellacious symptoms of the sort you describe from just one capsule of lactobacillus probiotics, especially acidophilus. Burning total body pain in muscles, joints, tendons, nerves etc. I'm lucky in that the symptoms last only 2-3 days, after that I'm back to baseline.

Really sorry to hear about your predicament. Horrific reactions to LAB and many other things have been discussed over and over again on the big resistant starch thread but unfortunately many people do not know how risky probiotics and prebiotics can be in ME.

Yep. In my early days of ME (back in August of 2012) I did a fecal transplant because of life long IBS and years of CDSA's without any lacto growth. Well after the FT I was high in lacto but also feel this stupid decision lead to a decline in overall functioning which continues to this day. Or they can be completely unrelated for all I know. Good news is the FT cured my bloating issues for the most part.
But if I had the choice again I'd stay away from introducing even healthy microbiomes until the science really catches up on this.

 

[PatJ]

This is different from visual snow I believe. This is called blue field entoptic phenomenon and is caused by white blood cells passing through the capillaries in the eyes.

BFEP is another kind of white dots in the visual field. The linked page has an example simulation of what they look like. I see these as well sometimes, but they are quite different from visual snow. I see the visual snow everywhere since it's overlayed on my visual field. Some backgrounds make the snow more or less visible. Constant color backgrounds make it easier to see the snow.

 

[justy]

BFEP is another kind of white dots in the visual field. The linked page has an example simulation of what they look like. I see these as well sometimes, but they are quite different from visual snow. I see the visual snow everywhere since it's overlayed on my visual field. Some backgrounds make the snow more or less visible. Constant color backgrounds make it easier to see the snow.

Sorry a bit off topic - do you know what seeing shadows everywhere is or is called? when I am crashing to morea severe leve; - like today I can see streaks of shadow - a bit like when you come in from a bright sunny day, except I haven't.

 

[justy]

Personally I think its the same illness but with differing severeity. Ive been mildly, moderately and severely ffected (although not VERY severe). I ve also had a remission to near normal for a number of years.

In MS we have different types that may look a little different - Primary progressive is going to look a lot like our severe and very severe M.E group. Relasping remitting is more like mild to moderate patients or just mild, and secomdary progressive, which pften comes after relapsing remitting - sound famil;iar? certainly does to me.

http://www.nationalmssociety.org/What-is-MS/Types-of-MS

I know It is a hobby horse of mine, but I think we can learn a lot from MS and a lot of PWME are very similar to PWMS. The severity of MS can also be different from case to case. One person may be bedbound, paralysed, unable to swallow or speak much, while another person may be able to work with adjustments, use a walking stick for balance issues and mainly suffer from fatigue that makes their life more difficult.

 

[PatJ]

Sorry a bit off topic - do you know what seeing shadows everywhere is or is called? when I am crashing to morea severe leve; - like today I can see streaks of shadow - a bit like when you come in from a bright sunny day, except I haven't.

Can you explain a little more what you mean by shadows and how they differ from normal shadows? Do you see them even when your eyes are stationary, or are they like dark trails when you move your eyes, or some other effect?

I sometimes notice that shadows will strobe or flicker very quickly when I'm more tired, but I don't think that's what you mean. I also sometimes see motion trails behind moving objects, or a slight white halo around object edges.

 

[justy]

Do you see them even when your eyes are stationary, or are they like dark trails when you move your eyes, or some other effect?

Both actually! They are just like the weird effect you get when you come in from a sunny day to a darker room and cant see so well as there are shadows everywhere. At my worse I could see them when sitting completely still, lark dark patches or vertical lines of shadow over the walls etc - not so dark it is notieceable over people though - just shadow on the background.

 

[PatJ]

They are just like the weird effect you get when you come in from a sunny day to a darker room and cant see so well as there are shadows everywhere.

That effect is called dark adaptation. I've just read a little about it so what I'm about to say is speculative. There is a pigment that is bleached from rods in the eye when it is exposed to light. The brighter the light, the more the bleaching. When the light level reduces again the pigment (called rhodopsin) starts to replenish but takes time to do so (up to 30 minutes when going from sunlight to a dark room).

This page on Wikipedia says rhodopsin has something to do with Vitamin-A derivatives but I can't think clearly enough, and don't have the knowledge required to understand it.

Maybe there's a rhodopsin regulation problem when you are feeling worse than usual? There are other elements involved in light/dark adaptation as well, so maybe one or more of those other elements is involved as well.

 

[alex3619]

On biobanks, biobanks are never intended to find a cause. They are intended to be a resource for finding a cause. Each sample is massively categorized, using wide range of descriptors. So it should be possible (if its done right) to pull out only ME patients using a particular definition, though with some small margin of error. Such banks do not care whether a researcher is researching CFS (Fukuda) or ME (ICC) or SEID. The researcher can specify the criteria, and if the research need is acceptable the biobank just delivers. The question is what are the researchers actually going to be looking into.

I would hope that each sample has a severity label, or several. Biobanks are probably very short of severe ME patients though.

 

[Eeyore]

@justy - One of the symptoms I reported most when I first got sick was floaters - I'm not sure if this is what you mean. I have also, consistently, had increased floaters when relapsing. These are due to actual physical objects/debris in the eye, and suggest some sort of inflammation. Doctors never got too excited about it, and while I agree it's not a debilitating symptom, I have always thought it might be a clue.

I also think that MS is very closely related to ME. I'm not sure exactly what the difference is, but I think we also subdivide into the same categories as MS patients, albeit in different ratios. Most MS patients are "relapsing-remitting" type initially (about 85%). If I were to put myself in a category, it would definitely be that. I have protracted relapses followed by remissions. I'm not 100% in remissions, but I'm not too bad. The problem is I can never tell when it's going to end, and once I'm in a relapse it can take years to get out again.

Primary progressive MS is relatively rare in the MS community, and it's probably similar to the most severe ME.

So far, I don't know any ME patients to go into a secondary progressive kind of phase after years of relapsing-remitting, but there may be some. In MS, untreated, it used to be very common, but modern treatments have reduced this.

MS can come on or relapse after infectious illness sometimes - that sounds awfully familiar. It's also autoimmune in nature, and responds very well to rituximab. In MS there are usually anti-ganglioside antibodies (also true in GBS and CIDP). There is at least one study that showed this in fibro and ME patients as well - interestingly, I think there were higher rates of anti-ganglioside antibodies in fibro than in ME.

MS is a CNS disease. ME/Fibro seem to be at least partially, if not entirely, peripheral - although there is some evidence for white matter hyperintensities on MRI. I've had this myself, shortly after I first got sick. However, they aren't in the right locations (e.g. periventricular) for an MS diagnosis, and I've never heard of oligoclonal bands in ME cerebrospinal fluid. There are obviously some differences, but I'm not exactly sure what.

 

[Marky90]

@justy

MS is a CNS disease. ME/Fibro seem to be at least partially, if not entirely, peripheral - although there is some evidence for white matter hyperintensities on MRI. I've had this myself, shortly after I first got sick. However, they aren't in the right locations (e.g. periventricular) for an MS diagnosis, and I've never heard of oligoclonal bands in ME cerebrospinal fluid. There are obviously some differences, but I'm not exactly sure what.

Could the white spots in ME also be due to autoimmunity? @alex3619 ?

 

[alex3619]

Could the white spots in ME also be due to autoimmunity? @alex3619 ?

I have been wondering about this but never really decided. Its possible. I do not know enough about MRI to be sure. I think the mechanism is most likely to be different to MS, as if I recall correctly both the location and duration of such white spots is different in ME. I would be very interested to see if those spots in us match up with distribution of muscarinic type 4 (M4) receptors in the brain. That might tell us. However even in such cases it would probably only be about one in three of us. M3 and a2b receptors will have their own distribution map.

It now occurs to me that if we can find different patterns of hyperintensities, and match them against receptor distributions, we might isolate potential receptor targets for autoiimmunity which can then be tested using blood work.

So lots of questions, but few definitive answers. But as the questions get better and better, so the science will be better.

 

[K22]

I think the problem with comparing ME to MS is for many its not a progressiv illness but management and exertion pay huge roles in progression and severity & in causing damage, in MS these things attacks can just happen and gradually disable you. My own ME, both with warning signs and then sudden onset, was rekatively mild to begin with, not so that i coukd work a 12 hour shift or even 8 hours repeatedly but i was very mobile etc and i fully think if id had the luck to see an ME knowledeable dr i would have stayed like that. Now im very very severe but it isnt that i have that "type" but because i was advised to ignore symptoms and gt on with life so severe m.e is to me like the damage you might get from persisting to walk on a brokn leg or badly irritating a lesion, its an aggravation of the underlying problem which then turns into a comlicated mess much harder to rectify. Another big difference is that some with ME if caught well go into remission, even recover, even though some might have started off in bed. As far as i mS does not have that trajctory.

 

[Marky90]

I just read the whole Whitney Dafoe story.. I feels so sad for him :/ He stood in the storm for so long, and now he can*t even communicate by cards.. Sincerely hope something gradually can get him better..

It also freaks me out a bit. Do we know approx how many with ME end up in that state never to recover?
I guess one just have to hope one doesn`t follow such a trajectory.
I always think about this when in a crash, guess i should stop it, doesn`t help anyway..

 

[sillysocks84]

I just read the whole Whitney Dafoe story.. I feels so sad for him :/ He stood in the storm for so long, and now he can*t even communicate by cards.. Sincerely hope something gradually can get him better..

It also freaks me out a bit. Do we know approx how many with ME end up in that state never to recover?
I guess one just have to hope one doesn`t follow such a trajectory.
I always think about this when in a crash, guess i should stop it, doesn`t help anyway..

It's not healthy, but it's normal. I do the same thing. I'm having what I hope is only a small crash. Last fall I had a big crash where it was hard to fill my lungs. It took months to get better. Now it seems I'm starting a crash again. Since you read his Whitney's story dI'd it mention he had any oi like pots with his? Curious about the similarities. I will read it eventually. Just don't feel it today.

My brain is a little foggy, did you mention you were having some treatments soon? I thought it may have been you that's getting rtx soon? If not I apologize. If so I wish you the best!

 

[Marky90]

It's not healthy, but it's normal. I do the same thing. I'm having what I hope is only a small crash. Last fall I had a big crash where it was hard to fill my lungs. It took months to get better. Now it seems I'm starting a crash again. Since you read his Whitney's story dI'd it mention he had any oi like pots with his? Curious about the similarities. I will read it eventually. Just don't feel it today.

My brain is a little foggy, did you mention you were having some treatments soon? I thought it may have been you that's getting rtx soon? If not I apologize. If so I wish you the best!

Hey

Whitney gradually got very much worse after a trip to india, but he was sick for a while before this.

Here is his testimony:

"Update - June 2013Really sick. I can't talk. Can't type/text enough to communicate. Haven't had a conversation with someone in 6 months..."

"-I have been struggling with health problems for the past 8 years, since I was 21. Every time I traveled my health seemed to plummet. But I have always been inspired and dedicated and never thought I'd wind up where I am now. So I kept going, kept pushing myself to do everything I wanted to do. My trip to India was the last straw it seems. For the past 4 years I have been really sick. I started a wedding photography business when I realized I could no longer hold a full time job, thinking that it was a blessing in disguise because once I got my health back I would be making money doing something I loved. After a year things were looking really good business wise, but it took me longer and longer to recover from the intense physical requirements of shooting a wedding. When I couldn't recover in a week in order to shoot the next wedding, I decided I had to give it up which was pretty heartbreaking because of what it represented. That was in 2010. For the last 2 years I have been bedridden much of the time, my health and mobility slowly decreasing. I'm now forced to rest in bed most of the day, saving up energy for little bits of projects like writing this, or working on some photographs for a half hour or an hour on a good day.

About 2 years ago, after seeing countless doctors and specialists in every area of medicine I could find, having blood drawn over and over again and literally hundreds of tests done, I was finally diagnosed with Chronic Fatigue Syndrome by Dr. Andy Kogelnik at the Open Medicine Institute in Mtn View CA. I have been working with him ever since. But there is no cure. I will be taking some experimental drugs that have shown promise in limited trials. Let's hope for the best.

The Symptoms of Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME) as it's called in Europe, vary from patient to patient. The most fundamental symptom is debilitating fatigue. But fatigue is much too mild a word. I like to compare the state I'm in now to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day- hung over, not having slept or eaten in 3 days- is close, but still better than many CFS patients feel every day. "Total body shut down" would be a better phrase because you are at a point where your body physically does not have the energy to keep going.

Patients with CFS also experience something that is often called Post Exertional Malaise.. Most people, including people afflicted with many other illnesses improve with exercise. Even after an intense workout or a long day of work, they recover after a night's rest. Patients with CFS experience a severe worsening of physical symptoms during or after exercise. We tend to have a certain amount of energy reserves (far less than healthy people) often called an "energy envelope". If we push ourselves to keep going past this, the symptoms worsen significantly and it often takes days or weeks to return to where we were before. Some patients are permanently worsened. No amount of willpower, happiness or excitement changes this. I can be out of my mind with bliss and still run out of energy to work on something. There are some new studies examining this unique symptom and they are finding that patients with CFS react differently to exercise. We will see much more on this in the near future and hopefully see a diagnostic test emerge from this research soon. One of the terrible things about CFS is that because of the lack of understanding in the general public, most patients are constantly told to "suck it up", or that "exercise makes other people feel better" etc. Which creates a lot of guilt and shame for patients who already desperately want to do more but physically cannot. Not to mention not feeling understood. And it also pushes people to do more than they should, the results of which can be catastrophic. This is why we need more awareness. I spent the first years of this illness pushing myself. I thought it would eventual go away, and I tried to just keep going and do as much as I could. I didn't want to surrender to it, or let it shape my life. If I had known more about CFS and the consequences of over exertion, I may not be nearly as sick as I am today. Though who knows, I probably would have been optimistic and tired to do everything I did anyways.

I am now bedridden most of the time. I can't walk much because of circulation and muscle problems in my legs and arms. I don't even have the energy to sustain computer work or conversation with people for more than short amounts of time. But some people are much worse than I am. Many people wind up hospitalized unable to move or even speak, sometimes with constant and excruciating pain. Sometimes people's immune systems start over-reacting to everything from food to common chemicals to even light. Many people around the world with CFS are thrown into mental wards and given anti-psychotic meds. There's a story of a girl who was thrown into a swimming pool by a mental ward in an effort to "snap her out of it" by forcing her to "try". She nearly drowned. And surprisingly, it did not improve her symptoms.

Chronic Fatigue Syndrome affects 4 million Americans. Twenty-five percent are estimated to be severely affected, being bedridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, comparable to end-stage AIDS or end-stage renal failure. There is no known cause or cure though researchers have found unique abnormalities in the immune system, circulation system, ATP (energy) production, physical response to exercise, and autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord. Some people improve with time while others are bed-bound for decades. It is estimated that 4% of those with severe ME/CFS have any type of recovery.

To die of this illness is atypical; however, to hover in an in-between state where one experiences a 'living death' for years or decades is quite typical. Despite the ravages of Chronic Fatigue Syndrome, it is one of the least funded illnesses. Multiple Sclerosis is thought to be on average less severe in it's impact on patients' quality of life, and effects half the number of people. Yet it receives 100 million dollars per year from the Government for research while CFS received 6 million last year, and 5 million of that went towards disproving a flawed study, meaning only 1 million was spent on actual research. With so little funding, there is no hope for the millions of people suffering from this illness. “My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families.
I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million [to 4 million] people in the United States alone, has had a small fraction of the research dollars directed towards it.” —Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami“[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

As a nation, we need to invest in CFS/ME. It costs America an estimated 25 billion dollars per year in lost productivity and medical care. CFS destroys millions of American lives, tears families apart and shatters dreams as people are isolated in bedrooms, nursing homes or left homeless with very little medical or societal understanding or support. All genders, races, ages, and socio-economic backgrounds are effected. Anyone could wind up sick and just drop off the map. And we will likely loose everything that person would have become or contributed.

As a nation, we need to invest in CFS/ME.

All images on this website are for sale, hand printed by myself with all proceeds going to the Open Medicine Institute in Mtn View for CFS research. Please contact me for details. "

Yeah.. Tough reading.

I`m having rtx soon Thank you for your wishes. Hope your crash subside soon!

 

[sillysocks84]

This disease is just the weirdest most insidious disease. Seriously needs a cure! Well I hope rtx will be the answer for you. Please keep us updated @Marky90