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Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)

Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway …

results“When will this end?” It’s a question that most ME/CFS patients have probably asked themselves and their doctor many times. I certainly have.

Yet there is astonishingly little hard data on recovery rates from this illness or on how much patients improve, and the evidence there is doesn’t give too much hope.

Step forward a long-term follow-up study that shows unexpectedly good rates of improvement for younger people who developed ME/CFS after infectious mononucleosis (glandular fever) – though the results are hardly spectacular.

Around 11 years on from getting sick, just over half of all ME/CFS patients were able to work part or full-time, though fatigue levels remained high:

Longitudinal follow-up of employment status in patients with chronic fatigue syndrome after mononucleosis

The study was led by Dr  Morten Nyland and comes from the Neurology department of Haukeland University Hospital in Norway, site of the famed Rituximab pilot study. In fact two of the authors of this new paper were part of that pilot study.

And although this wasn’t a trial, patients were encouraged to use self-management (pacing/activity management), and the authors concluded that this probably contributed to the relatively good outcomes.

How the study worked (important)

An ideal study would take a bunch of patients and follow them at consistent time points, say the start of the illness, and then five and 10 years later. In this case, though, researchers made the most of pre-existing data to access a large group of patients who were followed up at very different times in their illness, an approach using two contact points that still yields invaluable results.

“Contact 1” was the first time the patient was seen by the specialist ME/CFS clinic at Haukeland University Hospital, any time between 1996 and 2006.

“Contact 2” was a follow-up questionnaire sent to all patiets in 2009, an average of 6.5 years later. There was huge variation in follow-up time between patients, for example at the second and final contact in 2009 one patient had been ill for 24 years and another only five years. The study had data at both contact points for 92 patients, making this one of the largest follow-up studies going.

At the initial contact, patients had been ill for an average of nearly five years, and again that hides a lot of variation. Half had been ill for 3.2 years or less, a quarter for under two years. The higher average was because some had been ill for a very long time. The patients were also relatively young (the average age was 24 years), reflecting the age profile of infectious mononucleosis, the ‘kissing disease‘, which particularly affects young adults and teens.​

Over half of all patients were employed at final contact

Pleasingly, the study used employment status as the clear-cut, objective primary outcome — and arguably the ability to earn a living is the outcome that matters most to patients. The graph below shows a lot of improvement between first and second contact, with an average gap of six years, though the gap will vary a lot between patients.

Unemployment is in red while employment (full-time or part-time) or being a student is in green. Onset is when they got ill, Contact 1 is typically five years later, and Contact 2 typically another six years on.

Clearly things have improved for many patients, but the overall situation at Contact 2 remains a great deal worse than onset.

Nyland work status at contact 2

Note that half of those employed at Contact 2 were working full-time, compared with only 1 in 10 at Contact 1, so presumably there has been an increase in hours worked per person, as well as more people working.

Caution: It’s possible that 11 years from onset (age 35 vs. age 24 at onset) some people would not be working anyway due to raising families so unemployment might not be zero even for a healthy group. And employment at onset wasn’t split into full-time/part-time.

How patients said their overall health had changed

The study also asked patients how their overall health had changed since Contact 1 (their first visit to the clinic). Most patients said they had improved, 12% reported they had got worse.

Nyland cgi stuff.bmp

Fatigue was also rated at both Contact 1 and Contact 2 using the Fatigue Severity Scale which gives an average score ranging from 1.0 (no fatigue) to 7.0 (maximum fatigue); any score of 5.0 or higher counts as severe fatigue. The average score at Contact 1 was 6.4, falling to 5.0 at Contact 2 — so even after this improvement the group as a whole was right on the threshold of severe fatigue.

Different degrees of improvement

The study measured ‘improvement’ in several different ways. As well as change in employment status, they looked at self-rated improvement (including an option of ‘recovered’) and change in fatigue scores.

You can see that ‘improvement’ ranged from 70% reporting any improvement, to 32% moving into employment, and 13% who rated themselves as recovered.

Nyland, relative improvement

Most people improved, even those who hadn’t improved at Contact 1.

Another encouraging point was that of the 26 people who said they had already improved at Contact 1, 25 improved again by Contact 2. And of the 38 who reported they hadn’t improved before, 25 (66%) improved by Contact 2. 

Fatigue improved much less than employment status

One slightly strange finding, which the authors didn’t comment on, is that average fatigue levels fall rather modestly compared with the percentage improving in employment status. While 32% of patients were able to start working, fatigue scores only fell from 6.4 to 5.0.

It seems likely that this in part is down to people getting back to work but still struggling, so that their level of fatigue doesn’t improve as much as it might.

Interestingly, although 28% were working full-time only 13% rated themselves as ‘recovered’, which supports the view that some people are improving and choosing to work full-time despite not being completely well, and may still be struggling quite a lot.

What ‘predicts’ return to work/improvement over time? (not a lot)

Overall, this important new study shows that outcomes for younger people who develop ME/CFS after mono are not great, but are probably better than expected. Around half were in work 11 years after onset, though fatigue remains high for most.

What might be driving this improvement?  The authors ran some fancy analysis to see what features (such as symptoms and age) predicted being in employment or an improved fatigue score at the final contact. It turned out that only lower joint pain at Contact 1 was associated with later employment, but the effect was small.

Similarly, low joint pain and depression at Contact 1, and better eduction, were predictors of less fatigue at Contact 2 — but again the effect was small.

Surprisingly, length of illness was not an important predictor of employment or fatigue. Generally those with shorter illnesses are seen as having a better chance of recovery, but that doesn’t appear to have been the case here.

It’s possible that outcomes for ME/CFS after mono are better than after other triggers. I’ll give the last word to the authors themselves, who suggest that both pacing/activity management and financial support through sickness benefits were likely to have played an important role to improvements:

“Self-management strategies, long-term sickness absence benefits providing a stable financial support, in addition to occupational interventions aimed at return to work were likely contributors to the generally positive, prolonged outcome.”

 

Simon McGrath tweets on ME/CFS research:

Phoenix Rising thread discussing this paper, including the more detailed post that led to this blog.

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{ 78 comments… add one }

  • Marco January 20, 2015, 2:08 pm

    Very interesting study and report Simon. Lots to dig into.

  • Woolie January 20, 2015, 5:21 pm

    @Gingergrrl, did you see this?

    http://phoenixrising.me/archives/26311

    View attachment 9728

    The average age of patients was 24, but this is hardly surprising, as most people get mono in their early tens or twenties.

    An important outcome of this study – where strict criteria were used to diagnose ME – is that full recovery does NOT mean you didn't have real ME in the first place!

  • Gingergrrl January 20, 2015, 6:26 pm

    @Woolie I am taking a brief break from posting on PR (b/c I am so overwhelmed with other things I am needing to do) but felt I needed to respond to this and really appreciate you pointing it out to me. I do have a few questions in case you or @Simon know the answer.

    1) It says that the average age of patients was 24 when they got mono so wouldn't they have a greater chance of recovery than someone like myself who got severe mono at age 41?

    2) Did it specify if they all had mono from EBV? I know EBV is the most common cause of mono but that there are also a few other viruses that can lead to mono.

    3) Did all of these patients go directly from mono to ME/CFS with no recovery in between? I recovered from mono (and continued to work full-time and got married) but had a new infection or a viral activation of EBV ten months later from which I never recovered and now am very severely affected and basically housebound. So am I sort of in a weird outlier group?

  • Esther12 January 20, 2015, 6:55 pm

    Ta Simon. Also, I can't remember if I said this in the thread where we discussed this study, but it is good to take the time to comment positively on studies that get important things right. So many papers are so poor that I can slip into only reading papers to find problems, quoting and commenting on only the things that piss me off.

  • heapsreal January 20, 2015, 7:17 pm
    Gingergrrl

    @Woolie I am taking a brief break from posting on PR (b/c I am so overwhelmed with other things I am needing to do) but felt I needed to respond to this and really appreciate you pointing it out to me. I do have a few questions in case you or @Simon know the answer.

    1) It says that the average age of patients was 24 when they got mono so wouldn't they have a greater chance of recovery than someone like myself who got severe mono at age 41?

    2) Did it specify if they all had mono from EBV? I know EBV is the most common cause of mono but that there are also a few other viruses that can lead to mono.

    3) Did all of these patients go directly from mono to ME/CFS with no recovery in between? I recovered from mono (and continued to work full-time and got married) but had a new infection or a viral activation of EBV ten months later from which I never recovered and now am very severely affected and basically housebound. So am I sort of in a weird outlier group?

    Im in your weird group, 31 when i got mono from both cmv and ebv as well as chickenpox(which i had as a kid). I initially had igg life long antibodies to ebv near the start of cfs but now dont have these?? so if i was tested for ebv now at 44, i would test negative? I think mono reactivation is alot more common than its realised. Theres something suppressing our immune systems??

  • Woolie January 20, 2015, 8:46 pm

    Hi @Gingergrrl,

    Gingergrrl

    1) It says that the average age of patients was 24 when they got mono so wouldn't they have a greater chance of recovery than someone like myself who got severe mono at age 41?

    The average age of the people at CFS onset was 24, but there seems to have been quite a range (looks like the range could be at least 17-31, just from the standard deviation). They did look at whether age at onset affect outcomes on a fatigue scale, and it didn't. Not at all. Not even a trend in that direction.

    Gingergrrl

    2) Did it specify if they all had mono from EBV? I know EBV is the most common cause of mono but that there are also a few other viruses that can lead to mono

    It just chose people based on "physician report" of mono. Prof Edwards seems to think some doctors will diagnose mono without any EBV-positive testing, but I don't know how common that is. Without the confirmatory bloods, the doctors I've met would just send you home with a diagnosis of undetermined viral illness.

    Gingergrrl

    3) Did all of these patients go directly from mono to ME/CFS with no recovery in between? I recovered from mono (and continued to work full-time and got married) but had a new infection or a viral activation of EBV ten months later from which I never recovered and now am very severely affected and basically housebound. So am I sort of in a weird outlier group?

    I couldn't see any talk of CFS onset (after mono), sorry.

    I know lots of stuff suggests the younger you are, the better your prognosis, and that could well be true. But there's another possiblility: it could be if you're younger, the onset of your CFS is more likely to be acute EBV. And it could be that EBV-onset has a slightly better prognosis.

    One thing they did notice affected recovery was whether the person had arthralgia (joint pain). That was assocaited with poorer outcomes. Do you have that?

  • Gingergrrl January 20, 2015, 10:56 pm

    @Woolie

    The average age of the people at CFS onset was 24, but there seems to have been quite a range (looks like the range could be at least 17-31, just from the standard deviation). They did look at whether age at onset affect outcomes on a fatigue scale, and it didn't. Not at all. Not even a trend in that direction.

    But even 31 is ten years younger than the age that I got mono which seems to make my recovery harder. Also (and I apologize I didn't get to read the article yet) but were they only measuring fatigue or other symptoms (like autonomic issues, PEM, ability to create energy on demand, etc.)

    It just chose people based on "physician report" of mono. Prof Edwards seems to think some doctors will diagnose mono without any EBV-positive testing, but I don't know how common that is. Without the confirmatory bloods, the doctors I've met would just send you home with a diagnosis of undetermined viral illness.

    That is a good point that I had not thought of so I guess we don't know if the people involved had EBV (but can assume most probably did.)

    I know lots of stuff suggests the younger you are, the better your prognosis, and that could well be true. But there's another possiblility: it could be if you're younger, the onset of your CFS is more likely to be acute EBV. And it could be that EBV-onset has a slightly better prognosis.

    I'm not quite understanding this sentence and keep re-reading it. Do you mean if you are younger, your infection is more acute (meaning severe) or something else? If it is more acute or severe, why would that have a better prognosis? Mine was extremely acute and severe.

    One thing they did notice affected recovery was whether the person had arthralgia (joint pain). That was assocaited with poorer outcomes. Do you have that?

    I never had any joint pain at any time during my illness (mono or ME/CFS.) I had a muscle and tendon injury in my right arm due to Levaquin but that is a separate issue. Now my muscles are weak overall, but worse on the side with the Levaquin injury. When I overuse my right arm (I am right handed) the pain gets worse but it is muscle/tendon pain and never in the joints. Why would this factor matter? Just curious.

  • Daffodil January 20, 2015, 11:08 pm

    this study is a JOKE

  • Research 1st January 21, 2015, 12:01 am

    Guys, One HUGE error in this upbeat study of no EBV in CFS is the recent science on EBV that contradicts it entirely. Take a look!

    ''Taken together, our findings give evidence for a deficient EBV-specific B- and T-cell memory response in CFS patients and suggest an impaired ability to control early steps of EBV reactivation. In addition the diminished EBV response might be suitable to develop diagnostic marker in CFS''.

    Source: Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome
    Loebel et al, 2014.

    So actually, the CFS patients lacked a correct immune response to it and thus would likely have a form of chronic mono. The reverse finding of this article saying the exact opposite.

    CFS patients were infected, when testing negative!

    Rule of thumb:
    Negative studies using antibodies (serology), don't rule out active infection in immune suppressed individuals!

  • alex3619 January 21, 2015, 1:05 am

    A negative study on some aspect does not necessarily mean that a study it contradicts is wrong. It does mean we have to look more carefully.

    Negative antibody titre findings in ME are not reliable. Period. Its only a weak indicator. We need viral titres, but this is more expensive usually.

    The other issue, including the T and B cells defect study, is that the problem is probably not active EBV. Its non-lytic EBV. Its not latent in the sense of not active, its just latent in the sense of not inducing lysis and an acute viral infection. Its still damaging. The research on this is only just getting started. PBMC viral levels are looking to be one thing they can test.

    The Haukeland study is an empirical outcome study, and much depends on the details of (especially)the methodology. There is already some suggestion on places like this forum, largely anecdotal, that teens get ME more severely but also have higher recovery. We have to keep an open mind until there is decent epidemiology. It could be right, only a slight trend, or wrong.

    This study is also not making grandiose claims, at least what I have seen so far as I have not read the paper yet. Recovery rate is about what some other studies have suggested. The range of recovery seems to be 1-14%, with this at the high end. Its also restricted to probable (not certain) EBV induced ME/CFS. If they used the CCC, which I presume is the case, then this is mostly about ME. If they used Fukuda its likely to have fewer ME patients.

    My computer is stuffed again and I am trying to function from my laptop, or I would be investigating this more.

    There are large numbers of us who can work for a while. I have a friend who is now severely disabled who was able to recover enough to work for a few years. This is not uncommon. Relapse is always possible though. I know lots of others who could recover enough to work, but still are quite sick. The working sick is perhaps a better description than recovered.

    The notion of recovery in ME is problematic, remission is perhaps a better word. If this is EBV related then remission is all that can be achieved, as we have no way to fully purge this virus with current technology.

  • Simon January 21, 2015, 4:05 am
    Woolie

    I know lots of stuff suggests the younger you are, the better your prognosis, and that could well be true. But there's another possiblility: it could be if you're younger, the onset of your CFS is more likely to be acute EBV. And it could be that EBV-onset has a slightly better prognosis.

    That's a really interesting observation!

    These mono patients were part of a larger cohort so potentially could be investigated

    Patients
    The 111 young patients, mean age 23 year, participating in this study were part of a larger cohort of 873 consecutive patients referred from all over Norway to a specialist chronic fatigue clinic at the Department of Neurology, Haukeland University Hospital during 1996–2006, published previously.14 Postinfectious and chronic fatigue syndromes: clinical experience from a tertiary-referral centre in Norway. In Vivo 2010;24:185–

    1. [Abstract/FREE Full text]

    It's not clear if they have outcome data on non-mono patients; if so it would be interesting to compare results by type of patients and by age.

    edit, this ties in with the idea of an early 'mono/EBV' peak, and a separate, later adult peak, quite possibly with very different causes:
    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008¿20127

    Figure One: twin age peaks:

    [​IMG]
    (this image may be copyright: it's from the linked open source paper above, but please don't reproduce without linking to the original paper and explaining it may be copyright).

    I haven't seen anything that says what proportion of adolescents with mecfs had it post mon/EBV, but get the impression it's most of them.

  • Artstu January 21, 2015, 4:18 am

    I had Glandular fever aged 20, then good health until aged 40 when I got CFS/ME. I'm looking forward to feeling much better in a couple of years at age 51.

  • Lynn January 21, 2015, 4:23 pm

    I contracted Mono at age 19 in college. I then had the typical low grade fever and swollen lymph nodes for years afterwards. I was diagnosed as having Mono again by the University of Michigan almost 3 years after the original inset. I struggled with ME/CFS symptoms for years but I was very high functioning. I built a great career but finally crashed at age 36.

    I think this study would have put me in the category of recovered because I was employed. The reality was, like many of us I just kept pushing on until I could no longer do so. I wonder if this study continues following these people if the researchers will see something similar?

    Lynn

  • Hope123 January 21, 2015, 8:05 pm

    Haven't read the article but a few thoughts:

    1) I don't remember the details but age and severity of EBV infections are correlated. In the past and 3rd world countries, where kids get EBV early, even before the teenage years, they often don't have any symptoms. In first world countries, the age of getting EBV has risen to even late teens (and I didn't get it until much later). This goes back to the number of immune cells (I think it is B?) that are available and adaptable. Younger people have more of these cells and they are more flexible.

    2) I like that the authors looked at work as an important outcome and it's a good start but I would hesitate to say that is the most important outcome for everyone. Being able to take care of yourself, travel, ability to exercise, take care of family, etc. are also important. Being able to work doesn't mean that people are able to do these things. A more encompassing measure of function would be interesting to see in future studies.

    3) My guess is getting sick at a younger age may mean that people are able to adapt to work more easily than someone who gets sick later. For instance, I know someone who has been disabled since childhood but not with ME/CFS; this person was ambitious and starting from their teens, found and worked on a career path that would fit her disability successfully. One interesting aspect would have been to asked if people changed or curtailed their plans/ education because of illness. For instance, would that receptionist have been a scientist had she not been ill?

    4) The rate of employment for people with ME/CFS ranges from 25% to 70% depending on the study/ survey so 50% employment in this study — I'm not sure if it's all that different from the average. It's hard to do a direct comparison because most studies of employment have used Fukuda.

  • taniaaust1 January 22, 2015, 1:06 am
    Woolie

    An important outcome of this study – where strict criteria were used to diagnose ME – is that full recovery does NOT mean you didn't have real ME in the first place!

    nods and something people should remember. I got attacked an ME website for severe ones with ME after I recovered from extremely severe ME over time. At the 1st follow up in this study had I been in it, I would of been one of those lucky 13% listed as fully recovered. Look where I am today thou, sick again to the point I need a wheelchair and a careworker to go out.
    ………

    Im finding this study a little strange in that the fact NO-ONE was unemployed at all on outset. For countries typical unemployment rates, you'd expect there would be some unemployment showing at the start, yet out of 92 patients, there wasnt any at all which were unemployed.

    I also dont think this study was from a typical percent of a population either seeing 53% were students. This makes me think thou the average age listed was 24 years, I personally think they must of had lots of younger ones in this study with the average age before pushed up by a few very oldies.

    I dont know if it tells in the full study or not (Im not up to reading it) but I'd like to know if only say 3 hrs work per week per week was counted as part time employment, I would guess that was so. Including part time study in things make things appear more positive then things really are. I would of found it even more interesting if they had an average amount of hours per week of work being done for the whole group.

    Still a very interesting study and Im glad they did it.

  • Jonathan Edwards January 22, 2015, 3:19 am

    The incidence graph in brown and blue seems to me to tell us more than almost everything else we know about ME/CFS. Epidemiology generally doesn't lie and it forces constraints on any hypothesis right at the start.

    My initial reactions are that:
    1. There are obviously two diseases. This is not a wobble.
    2. The first disease does NOT look like EBV, it starts too early.
    3. The first disease does not fit either with the 'high achiever crash/yuppie flu' concept, which ought to be more 18-28.
    4. The second disease is NOT a typical autoimmune disease because it tails off by 60. A purely B cell stochastic process should go on getting commoner with age until you start to exhaust the susceptible genetic pool (which happens for RA and breast cancer only around 85). The only autoimmune disease that has this sort of curve is lupus.
    5. The first disease could be a T cell disease such as type I diabetes or an adolescent immune disease like anti-DEK+ve oligoarthritis (one of the common childhood arthropathies).
    6. The early curves for boys and girls look more or less identical to what Esther Crawley reports, which gives reassurance that this is bona fide and not skewed by some local cultural factor.
    7. This is why we need more population based studies! And what we need is to have a population for which curves can be constructed for known T and B cell diseases, EBV, reactive affective disorders (i.e. depression, phobias etc.) and anything else relevant.

    As an aside in relation to a comment from Woolie: I think there may be a misunderstanding about mono diagnosis – I agree that the more or less all physicians would want specific evidence from tests to call it mono although I do not know how rigorously these get interpreted.

  • lansbergen January 22, 2015, 5:28 am

    It could be the same disease. In the aldult animals infection pressure was the main factor. In the young animals infection could not be prevented because the action that caused it was required by law.

    Does the age curve not reflect wpmen caring for infeced schoolchildren?

    Jonathan Edwards

    The incidence graph in brown and blue seems to me to tell us more than almost everything else we know about ME/CFS. Epidemiology generally doesn't lie and it forces constraints on any hypothesis right at the start.

    My initial reactions are that:
    1. There are obviously two diseases. This is not a wobble…

  • alex3619 January 22, 2015, 5:39 am

    It might be two diseases, I have favoured that idea for some time. However it could also be two pathways to the same end state, perhaps with two different risk factor profiles, including hormonal changes.

  • Simon January 22, 2015, 6:26 am
    Jonathan Edwards

    The incidence graph in brown and blue seems to me to tell us more than almost everything else we know about ME/CFS. Epidemiology generally doesn't lie and it forces constraints on any hypothesis right at the start.

    My initial reactions are that:
    1. There are obviously two diseases. This is not a wobble.
    2. The first disease does NOT look like EBV, it starts too early.
    3. The first disease does not fit either with the 'high achiever crash/yuppie flu' concept, which ought to be more 18-28.
    4. The second disease is NOT a typical autoimmune disease because it tails off by 60. A purely B cell stochastic process should go on getting commoner with age until you start to exhaust the susceptible genetic pool (which happens for RA and breast cancer only around 85). The only autoimmune disease that has this sort of curve is lupus.
    5. The first disease could be a T cell disease such as type I diabetes or an adolescent immune disease like anti-DEK+ve oligoarthritis (one of the common childhood arthropathies).
    6. The early curves for boys and girls look more or less identical to what Esther Crawley reports, which gives reassurance that this is bona fide and not skewed by some local cultural factor.
    7. This is why we need more population based studies! And what we need is to have a population for which curves can be constructed for known T and B cell diseases, EBV, reactive affective disorders (i.e. depression, phobias etc.) and anything else relevant..

    I think I might have confused things slightly by posting about a separate Norwegian incidence study on this blog about the entirely Haukeland post-mono outcomes study. The study with the twin age peaks is discussed here
    CFS/ME starts most often age 10-19 & 30-39: Norwegian population study
    which might be the best place to continue this discussion about the meanings of the age peaks? I'll copy over the key points and respond there.

  • biophile January 22, 2015, 8:40 am

    Yeah, although it is wise to be very cautious about any definition of recovery, when you look at the earlier ME outbreaks, IIRC a sizable proportion improved or even recovered within months of onset (the definitions of recovery may have not been particularly rigorous or comprehensive though). It's the ones who failed to improve or recover early on which had the most problems later on. Some of the remaining patients improved very slowly over time but many remained severely ill for decades or relapsed frequently. However, I think Jason et al (?) published a very long term followup which found that even those who reported a recovery were still significantly worse off on most measures compared to healthy controls.

    My symptoms started as an adolescent around the same time a sibling began a struggle with suspected glandular fever. Even though I had chronic problems with sore glands and blocked sinuses (on top of a bunch of other symptoms I tried to keep to myself), at the time I didn't really put it together, and the first doctor I reached out to suggested that I probably have "growing pains", then after a naturopath failed to help I was left to think it was psychological, although I always struggled with that conclusion because its explanatory power seemed inadequate compared to symptoms.

    It was distressing but impairments were relatively mild in the early years, but I was open to mind over body ideology, pushing through symptoms, and (multiple failed attempts at) regular exercise. It was trying to live an ordinary life and being subjected to quackery which triggered long term descents into the pit. If I knew back then a fraction of what I knew now and got a proper diagnosis with proper advice, I don't think I would be nearly as chronically affected as I am now decades later. On the other hand part of me always felt down deep that whatever mistakes I made only accelerated the enviable.

  • Sidereal January 22, 2015, 9:36 am
    biophile

    However, I think Jason et al (?) published a very long term followup which found that even those who reported a recovery were still significantly worse off on most measures compared to healthy controls.

    This study?

    J Clin Psychol. Author manuscript; available in PMC Mar 3, 2014.

    Published in final edited form as:
    J Clin Psychol. Sep 2012; 68(9): 1028–1035.
    Published online Jun 29, 2012. doi: 10.1002/jclp.21880
    PMCID: PMC3940158
    NIHMSID: NIHMS551018
    Understanding Long-Term Outcomes of Chronic Fatigue Syndrome
    Molly M. Brown, M.A.,1 David S. Bell, M.D.,2 Leonard A. Jason, Ph.D.,1Constance Christos,1 and David E. Bell, MPH2
    Author information ► Copyright and License information ►

    The publisher's final edited version of this article is available at J Clin Psychol
    See other articles in PMC that cite the published article.

    Go to:
    Abstract
    Objective
    This study sought to examine long-term health, symptom, and disability outcomes among patients with chronic fatigue syndrome (CFS) by comparing those diagnosed with CFS 25 years ago with healthy controls.

    Method
    Of the 25 participants diagnosed with CFS 25 years ago, five self-reported that they maintained a diagnosis of CFS, while 20 reported no longer having a diagnosis. These two groups were compared with healthy controls on outcomes related to functioning and symptom severity.

    Results
    Those who remitted from CFS showed significantly more impairment on 21 out of 23 outcomes compared to controls. On 17 outcomes, those who remitted had non-significant differences in impairment compared to those who maintained a CFS diagnosis.

    Conclusions
    Findings from this study suggest that over time many individuals will not maintain a CFS diagnosis but will not return to their premorbid level of functioning.

    I think I remember David Bell talking about these kids and remarking that once they lost OI they considered themselves recovered but in actuality they were still sick compared to normal controls, they had just used various strategies to adapt their lifestyles to ongoing symptoms.

    My symptoms started as an adolescent around the same time a sibling began a struggle with suspected glandular fever. Even though I had chronic problems with sore glands and blocked sinuses (on top of a bunch of other symptoms I tried to keep to myself), at the time I didn't really put it together, and the first doctor I reached out to suggested that I probably have "growing pains", then after a naturopath failed to help I was left to think it was psychological, although I always struggled with that conclusion because its explanatory power seemed inadequate compared to symptoms.

    It was distressing but impairments were relatively mild in the early years, but I was open to mind over body ideology, pushing through symptoms, and (multiple failed attempts at) regular exercise. It was trying to live an ordinary life and being subjected to quackery which triggered long term descents into the pit. If I knew back then a fraction of what I knew now and got a proper diagnosis with proper advice, I don't think I would be nearly as chronically affected as I am now decades later. On the other hand part of me always felt down deep that whatever mistakes I made only accelerated the enviable.

    My history is very similar. I never fully drank the psychology koolaid but when I was younger I struggled with many ever-changing symptoms which I kept to myself for as long as I could. I almost never went to the doctor as I was always somewhat doubtful about their organic basis and never did anything to really educate myself properly about the management of this disease because I preferred to pretend that ME/CFS doesn't exist, or if it does, that I didn't have it. I was doing all the wrong things for many years as a result of my ignorance.

    Doing exactly what psychology thinks we should all do, i.e. trying to live a normal life and ignoring/pushing through symptoms is what ultimately led to complete disability. I became bedridden after I stupidly went against my innate skepticism and gut feeling and gave in to the GP's badgering to embark on a diet & gentle informal graded exercise programme of daily walks. Doing that diligently for about 12 months is turned my previously mild ME (working full time with difficulty) into severe and almost completely bedridden.

    As for mononucleosis, I've never had it but when I was a child my brother who was a teenager at the time had a severe version lasting for months and his body temperature forever remained a degree lower than normal although he has so far not developed other ME/CFS symptoms. My own health problems soon followed including the low body temp which developed some years later.

  • meme1234 January 22, 2015, 1:22 pm

    I would like to know out of the people who recovered what they did to help their recovery if anything- did they change diet for instance ?as maybe there is a link to why some people get well and others don't ?

  • MeSci January 22, 2015, 1:57 pm
    Gingergrrl

    I'm not quite understanding this sentence and keep re-reading it. Do you mean if you are younger, your infection is more acute (meaning severe) or something else? If it is more acute or severe, why would that have a better prognosis? Mine was extremely acute and severe.

    In medical terminology, acute means of short and sharp course, often severe (but I don't think it has to be severe). It's in contrast to chronic, which is long-term.

  • Woolie January 22, 2015, 5:02 pm
    Lynn

    I wonder if this study continues following these people if the researchers will see something similar?

    This is an interesting thought, @Lynn. Your profile sounds very much like mine: onset at 25 with mono-like illness (not confirmed through blood tests at the time), followed by long mono-like episodes (low grade fever, etc.), but able to return to work at 29. I'm now 50 and having my worst crash in 22 years.

    Obviously, that sort of thing isn't going to show up in the time frame studied here.

  • Woolie January 22, 2015, 5:25 pm
    Gingergrrl
    Woolie

    I know lots of stuff suggests the younger you are, the better your prognosis, and that could well be true. But there's another possiblility: it could be if you're younger, the onset of your CFS is more likely to be acute EBV. And it could be that EBV-onset has a slightly better prognosis.

    I'm not quite understanding this sentence and keep re-reading it. Do you mean if you are younger, your infection is more acute (meaning severe) or something else? If it is more acute or severe, why would that have a better prognosis? Mine was extremely acute and severe.

    @Gingergrrl, what I meant was this: what if your prognosis depends not on your age, but on the nature of the event that triggered your onset?

    Now, we know that post-EBV ME is more common in younger than older people. This is because most people – with some exceptions like yourself – have encountered EBV by the time they get to their mid 30s, so ME occurring after this age is only rarely going to involve EBV/mono as the triggering event.

    If post-EBV ME has a better prognosis than other types of onset, then that younger group – which contains more EBV-onset cases – might show better recovery for that reason. Not because they're younger as such, but because more have EBV as their onset.

    I don't know if that's the case at all. But its a possibility. It does seem to me that there are mutliple ME's. Acute onset ones do seem to have a better prognosis than gradual, and I think this is probably because they reflect different disease processes.

  • Gingergrrl January 22, 2015, 8:07 pm
    Woolie

    I don't know if that's the case at all. But its a possibility. It does seem to me that there are mutliple ME's. Acute onset ones do seem to have a better prognosis than gradual, and I think this is probably because they reflect different disease processes.

    @Woolie I guess what I am still trying to clarify (using the theory of the article- which I still have not read!) is, would my case be considered acute? I became very ill immediately after a minor surgery and five days later diagnosed with mono from EBV. I was extremely ill, the sickest of my entire life, from the mono for about 6-8 weeks. But then I fully recovered (or so I thought) until I got another infection about 10 months later which led to tachycardia, dysautonomia, and a gradual decline from Jan 2013 to the present but with the last six months being an extreme worsening of my symptoms. So is this acute or chronic?

  • Snow Leopard January 22, 2015, 8:17 pm
    Gingergrrl

    So is this acute or chronic?

    Neither. It clearly illustrates the problem with dividing between 'acute' and 'gradual' onset, when the real-life demarcation is not so simple.

  • Woolie January 22, 2015, 9:12 pm
    Gingergrrl

    @Woolie I guess what I am still trying to clarify (using the theory of the article- which I still have not read!) is, would my case be considered acute? I

    I don't think this is all that uncommon in "acute onset" cases. There's an acute viral illness that appears to resolve, then later down the line, the person gets what seems to be a relapse. And so on. Maybe others could comment, but I still think this fits the sudden onset profile better than the gradual onset.

    If you can identify a clear turning point in your life when you went from being completely normal to quite messed up, then its sudden onset, even if there are some relapses and remissions along the way.

  • deboruth January 24, 2015, 10:12 pm

    Simon, there is nothing pleasing about being in part time work in your 30s, as these people seem to be. In your 30s you need to be in full time work to be on a path that will enable you to support yourself and have a retirement. In this case only 27% have full time jobs, which is proper employment. "Part-time" could be five or ten hours a week. Also, being fatigued all the time, even if you are in the lucky 45% with full time work, does not allow for a full life. In fact 100% of these people are not leading the life they could if decent medical research were done and treatment available.
    Home-makers should be taken account of. Those with children and no child-care help should be scored as in full-time work.

  • Simon January 25, 2015, 3:58 am
    meme1234

    I would like to know out of the people who recovered what they did to help their recovery if anything- did they change diet for instance ?as maybe there is a link to why some people get well and others don't ?

    I would like to know too! But this was not part of the study, I'm afraid.

    deboruth

    Simon, there is nothing pleasing about being in part time work in your 30s, as these people seem to be.

    I completely agree – the 'pleasing' part was that they used an objective measure (employment) rather than a less-reliable self-report scale as the primary measure:

    Simon

    Pleasingly, the study used employment status as the clear-cut, objective primary outcome

    deboruth

    Also, being fatigued all the time, even if you are in the lucky 45% with full time work, does not allow for a full life.

    Again, I agree. I think the results are better than I've seen for other studies (which is what I meant by 'surprisingly good') but still not impressive. I'd tried to reflect this in the blog:

    Simon

    Around 11 years on from getting sick, just over half of all ME/CFS patients were able to work part or full-time, though fatigue levels remained high:

    Simon

    Step forward a long-term follow-up study that shows unexpectedly good rates of improvement for younger people who developed ME/CFS after infectious mononucleosis (glandular fever) – though the results are hardly spectacular*.

    * this edit was made early on for the blog but didn't get picked up by the system to change the version on this thread – apologies, this has now been done.

    deboruth

    Home-makers should be taken account of. Those with children and no child-care help should be scored as in full-time work.

    That's a very good point. I did mention that even a healthy population probably wouldn't be working full-time at this age because of childcare, but the study would have been stronger if the researcher had measured home-making in an equivalent way to employment,

  • msf January 26, 2015, 5:24 am

    It seems odd to me that the authors would go to all the trouble of tracking these patients over a number of years, and yet not try to establish that it was EBV that caused their mono-like symptoms. Perhaps this was because it was (partly) retrospective, and they didn't have access to the patient's initial test results. I agree that most doctors should be trying to confirm EBV in cases of mono, at least in a country like Norway, but in a scientific paper you would hope that there would be some evidence of this. I couldn't even find the part that someone else quoted about it being based on physicians reports, in fact it seemed rather to be based on a retrospective questionnaire, which is hardly enough to define the cohort as 'ME mono.'

    Re: the twin peaks, I think both suppositions (i.e. that is it two diseases, or that it is the same disease) are plausible. But there is a third supposition too: that there are more than two diseases here. These could either contribute to the peak pattern (i.e. the first peak could represent the increased incidence of two (or more) diseases at that age) or they could just contribute to the overall incidence without significantly affecting the peak pattern (this is more likely to happen if there are many diseases).

  • Simon January 26, 2015, 5:53 am
    msf

    It seems odd to me that the authors would go to all the trouble of tracking these patients over a number of years, and yet not try to establish that it was EBV that caused their mono-like symptoms. Perhaps this was because it was (partly) retrospective, and they didn't have access to the patient's initial test results. I agree that most doctors should be trying to confirm EBV in cases of mono, at least in a country like Norway, but in a scientific paper you would hope that there would be some evidence of this. I couldn't even find the part that someone else quoted about it being based on physicians reports, in fact it seemed rather to be based on a retrospective questionnaire, which is hardly enough to define the cohort as 'ME mono.'

    Yes, it was because they saw all these patients after they developed cfs and after the initial mono – hence they recorded 'mono' not EBV as the cause. Which seems fair enough – they only claimed what they knew.

    The paper methods section

    The 111 patients constitute all patients diagnosed with CSF triggered by mononucleosis in the total cohort of 873 patients. The diagnosis of mononucleosis was based on the physician report following the patient to our clinic.

  • msf January 26, 2015, 6:09 am

    Thanks for finding the quote, but again it's not very reassuring – perhaps we can ask Lansbergen, but what does "the diagnosis of mononucleosis was based on the physician report following the patient to the clinic" mean? It could mean what you assumed it meant, but it could also mean that it was based on the physician's report, following the patient being referred to the clinic. Plus, the diagnosis of mono is hazy one, since there are many mono-like illnesses out there.

    I think we will have to wait for the Jason study into EBV mono in university students to conclude before we can say that what proportion of people with EBV Mono might end up being diagnosed with ME.

  • lansbergen January 26, 2015, 6:29 am

    In the species I observed there is only one known herpes virus. That was not found in the population I was watching but it became a problem in some other populations.

    msf

    Thanks for finding the quote, but again it's not very reassuring – perhaps we can ask Lansbergen, but what does "the diagnosis of mononucleosis was based on the physician report following the patient to the clinic" mean? It could mean what you assumed it meant, but it could also mean that it was based on the physician's report, following the patient being referred to the clinic. Plus, the diagnosis of mono is hazy one, since there are many mono-like illnesses out there.

    I think we will have to wait for the Jason study into EBV mono in university students to conclude before we can say that what proportion of people with EBV Mono might end up being diagnosed with ME.

  • msf January 26, 2015, 7:39 am

    Sorry, I'm not quite sure what you mean, but I mentioned you because I thought there might be a Norwegian version of the paper that might be a little clearer about how the patients were diagnosed with mono.

  • lansbergen January 26, 2015, 7:41 am
    msf

    Sorry, I'm not quite sure what you mean, but I mentioned you because I thought there might be a Norwegian version of the paper that might be a little clearer about how the patients were diagnosed with mono.

    I am not from Norway.

  • msf January 26, 2015, 7:48 am

    Oops, sorry, I think I confused you with someone else…there is a patient on here with a Norwegian name who is in a Haukeland trial, I was thinking of him.

  • Gingergrrl January 26, 2015, 3:45 pm
    deboruth

    Simon, there is nothing pleasing about being in part time work in your 30s, as these people seem to be. In your 30s you need to be in full time work to be on a path that will enable you to support yourself and have a retirement. In this case only 27% have full time jobs, which is proper employment. "Part-time" could be five or ten hours a week. Also, being fatigued all the time, even if you are in the lucky 45% with full time work, does not allow for a full life. In fact 100% of these people are not leading the life they could if decent medical research were done and treatment available. Home-makers should be taken account of. Those with children and no child-care help should be scored as in full-time work.

    @deboruth I agree with you on everything you said (although certainly not Simon's fault and he is just the messenger reporting on the study!) But I agree that someone could still be extremely ill for decades but somehow be able to work 5-10 hours per week which would count as a "part-time" job. Plus others may be mild to moderately ill but killing themselves to continue working but have no other quality of life. At closer look, this study does not give me much hope.

  • GracieJ February 5, 2015, 12:52 am

    Confirmed mono at age 35 preceded my symptoms worsening from a fibromyalgia definition to an ME definition. Reading this article was interesting, but it seemed somewhat misleading. Of course, working as opposed to being housebound or confined to bed is a much, much better "outcome" for anyone, but this disregards quality of life long-term. Were these people completely self-sufficient? How would they rate their own quality of life? I am not expecting answers to those questions from this study, of course, but it brings up factors to be used for the future.

    Currently, I am working part-time, and have been for nearly three years. My job is mostly physical, but with this illness, ANY job is physical. Sitting behind a desk is hard for me. My future is a question mark. My case looks good on paper – 75% function, back at work, mostly self-sufficient. But… my outcome is still being written. Can I make it to retirement age without a major crash and burn? Can I sustain this? Will I need more help? What happens to me with no retirement fund? Sure, I am ahead of the game earning a paycheck, but it does not take away other realities. I am still seen as short-sighted and irresponsible, for instance, that I do not have a retirement fund.

    Quality of life? Fantastic compared to being confined to bed. Still poor, though, as I have to come straight home from work and do little more than rest flat on my back. If income is the measure, I am cutting it. But we need far more factors than that to call it a great outcome.

    Long-term sustainability is my biggest goal in life right now!

  • Simon February 5, 2015, 6:35 am
    GracieJ

    Confirmed mono at age 35 preceded my symptoms worsening from a fibromyalgia definition to an ME definition. Reading this article was interesting, but it seemed somewhat misleading. Of course, working as opposed to being housebound or confined to bed is a much, much better "outcome" for anyone, but this disregards quality of life long-term. Were these people completely self-sufficient? How would they rate their own quality of life? I am not expecting answers to those questions from this study, of course, but it brings up factors to be used for the future.

    Hi Gracie
    I'm glad you are able to work a bit now, and hope it continues and your health improves. The article tried not to be misleading:

    Simon

    Around 11 years on from getting sick, just over half of all ME/CFS patients were able to work part or full-time, though fatigue levels remained high:

    Your experience fits with this speculation:

    Simon

    Interestingly, although 28% were working full-time only 13% rated themselves as 'recovered', which supports the view that some people are improving and choosing to work full-time despite not being completely well, and may still be struggling quite a lot.

    And of course we don't know whether or not these people will continue to be able to work

    Perhaps I shouldn't have used 'surprisingly good', though that was in the context of typical outcomes for people with this illness.

  • MeSci February 5, 2015, 7:24 am
    Simon

    Perhaps I shouldn't have used 'surprisingly good', though that was in the context of typical outcomes for people with this illness.

    That's how I read it. I guess the way people will read it will depend on their own particular situation, beliefs and outlook.

  • GracieJ February 5, 2015, 7:53 am

    @Simon I do agree with that! I do appreciate efforts to study this. What a puzzle it has been. Maybe with the progression in identifying subgroups, others will be spared this plight. I do see the hope. I just cannot appreciate the labels without the rest of the story.

    There is a human tendency, I think, to say, Well, there you go. You are okay. (Not you personally.)

    I made it to this point once before, but knew I was headed for trouble. The signs were there. Not sure it would last, I applied to occupational rehab, which I was told to do by Workforce Services. Long story short, I think they had a good laugh at me processing the request, the rejection letter was so full of mockery and sarcasm. It was pretty bad, to the verge of funny had it been a funny topic,

    Inside two years, my job was gone. My car died. My rental lease was determined invalid, and I was evicted suddenly. I was flat broke and abruptly homeless, just like that, with nearly no resources to remedy my plight. It was scary, unnecessary, painful – and yet I was still considered a-bod by government services, though I was back to walking dead. With no money to see the doctor who would not consider helping establish the disability paper trail, life was dark for a while.

    That is where I am coming from as I read.

    Without help, that hole would have been impossible to crawl out of. It wasn't coming from any government program designed to be the safety net. I went straight through the cracks.

    Between church, local community, and one sympathetic sibling, I was able to obtain a room rental and get through for several months. About the time my motivation to be on my feet was being scrutinized and questioned, both my parents passed away inside five days. It's not how anyone would choose resources, but suddenly I had money to take a year and rest, try new remedies, regroup, etc. I was expected to retrain as well, though in time that proved impossible.

    It was a sticky situation for years on end, one all too familiar in this crowd. Somehow or other we have to survive while these things are hashed out.

  • MeSci February 5, 2015, 9:44 am
    GracieJ

    I made it to this point once before, but knew I was headed for trouble. The signs were there. Not sure it would last, I applied to occupational rehab, which I was told to do by Workforce Services. Long story short, I think they had a good laugh at me processing the request, the rejection letter was so full of mockery and sarcasm. It was pretty bad, to the verge of funny had it been a funny topic,

    Inside two years, my job was gone. My car died. My rental lease was determined invalid, and I was evicted suddenly. I was flat broke and abruptly homeless, just like that, with nearly no resources to remedy my plight. It was scary, unnecessary, painful – and yet I was still considered a-bod by government services, though I was back to walking dead. With no money to see the doctor who would not consider helping establish the disability paper trail, life was dark for a while.

    That is where I am coming from as I read.

    Without help, that hole would have been impossible to crawl out of. It wasn't coming from any government program designed to be the safety net. I went straight through the cracks.

    Between church, local community, and one sympathetic sibling, I was able to obtain a room rental and get through for several months. About the time my motivation to be on my feet was being scrutinized and questioned, both my parents passed away inside five days. It's not how anyone would choose resources, but suddenly I had money to take a year and rest, try new remedies, regroup, etc. I was expected to retrain as well, though in time that proved impossible.

    It was a sticky situation for years on end, one all too familiar in this crowd. Somehow or other we have to survive while these things are hashed out.

    Dreadful. You need a lot of inner strength to get through all that crap. I have usually fallen through cracks in safety nets too.

  • Hip February 6, 2015, 3:34 pm

    Great article @Simon, thanks very much for writing it.

    There seems to be one or two resisting the idea that ME/CFS patients can recover, perhaps because the possibility of recovery somehow negates the seriousness of this disease, perhaps making ME/CFS look, in the eyes of the public and doctors alike, like a more trivial disease. Whereas this might be the case, nevertheless, it means the resistance is for political reasons, not scientific ones. Scientifically, this looks like a good study.

    Anyway, I'd like to make some points:

    (1) The study found that after around a decade, 28% of these mononucleosis-triggered ME/CFS patients were back in full time employment (but no doubt struggling with it), and 13% said they were recovered. Consequently, when there are articles about ME/CFS recovery stories in the press, these should not be automatically met with contempt and incredulity (as they often are on ME/CFS forums), because this new study does clearly show that recovery can and does occur.

    Indeed, it says here that in England and Wales, a conservative estimate puts the number of mononucleosis-triggered cases of ME/CFS at 3113 per year. That means, just from mononucleosis-triggered ME/CFS patients alone, we should expect to see 13% x 3113 = 405 ME/CFS full recovery cases each year in England and Wales. And that figure does not include any full recovery cases from other causes of ME/CFS.

    (2) Consider that the patients found on ME/CFS forums might not be that representative of ME/CFS patients as a whole. The reason why people are here is because they have ME/CFS. You probably won't find many former ME/CFS patients here, because I imagine most of those will be getting on with their lives, and will have put ME/CFS behind them. Thus this may bias the cross-section of ME/CFS patients found on these forums. So people on the forums may get the impression that recovery is rare, but that might be due to this possible bias of the type of patients on the forums.

    (3) The overall significance of this study for ME/CFS patients in general depends on what percentage of ME/CFS patients have this mononucleosis etiology. So for example, if only 1% of ME/CFS patients had this mononucleosis trigger, then the results of this study would have little bearing and relevance for ME/CFS in general. But if say 30% had this mononucleosis trigger, then the results would be much more relevant.

    How can we estimate the percentage of ME/CFS patients who had a mononucleosis trigger? Well this study found that the incidence of CFS was 9% after mononucleosis (glandular fever), and the authors gave a conservative estimate is that mononucleosis accounts for 3,113 new cases of ME/CFS per annum in England and Wales.

    But what is the incidence of ME/CFS overall? Well, this study (see fig 3) says that in 2001 in the UK, for every 100,000 persons, each year 50 will develop ME/CFS. Now the total population of England and Wales is 56 million, so from this we can calculate that the total incidence of ME/CF is 28,000 new cases per year in England and Wales.

    Thus now we can see that:

    11% of ME/CFS patients have a mononucleosis-trigger etiology.

    (calculated from 100 x 3,113 / 28,000 = 11%).

    So this gives 11% figure gives us some sense of how significant this new study on recovery rate is for the ME/CFS community: we now can see that around 1 in 10 ME/CFS patients will have a mononucleosis trigger, and as mentioned, of these, 28% will be back to full time work after around a decade, and 13% will be recovered.

    I would like to see a study on the recovery rates of enterovirus-triggered ME/CFS; I have a hunch this may harder to recover from. As we now know, in chronic enterovirus infections, the virus is capable of creating an unusual type of intracellular infection (called a non-cytolytic enterovirus infection), which may be much harder for the immune system to eradicate or control.

    (4) As for what virus caused these cases of mononucleosis and the ME/CFS that ensued: it says here that Epstein-Barr virus causes mononucleosis in more than 90% of cases, and it says here that cytomegalovirus causes 7% of cases. So EBV and CMV account for nearly all mononucleosis cases.

    However, that does not necessarily imply that the 90% EBV and 7% CMV figures also apply to these mononucleosis-triggered ME/CFS patients. It might conceivably be the case, for example, that CMV mononucleosis is behind most mononucleosis-triggered ME/CFS.

  • heapsreal February 6, 2015, 5:47 pm

    @Hip i wonder if there is some other underlying infection that suppresses the immune system that makes it easier for one to get mono or maybe mono that is harder to recover from?

    I keep thinking that these ebv/cmv reactivations generally only occur in immune suppressed. So is there some other infection such as lyme, which Dr Lerner finds dont respond to avs until bacterial infection is treated. Or do we have some immune defect that does allow us to suppress ebv/cmv??

    I would like to see a group of chronic mono patients treated so there nk function is returned to normal and see if treating this immune dysfunction treats the cause?? My thoughts and what i have researched, are that these herpes infections avoid the immune system by somehow lowering our own interferon, which is what helps drive our nk function???

    As a side note, interferon is well known to treat enteroviruses, so could EV or EBV be the immune suppressant????
    Or one effects the other?

  • lansbergen February 6, 2015, 6:22 pm
    heapsreal

    i wonder if there is some other underlying infection that suppresses the immune system that makes it easier for one to get mono or maybe mono that is harder to recover from?

    With the infection I suspect the innate system responses but the adaptive system fails.

  • Hip February 6, 2015, 8:13 pm

    @heapsreal
    Those speculations are certainly all interesting ones, but I guess they could equally apply to other chronic viral diseases.

    Why, for example, do some people who catch a coxsackievirus B infection go on to develop chronic CVB myocarditis from it (which is a chronic coxsackievirus B infection of the heart muscle that can cause heart attacks and can lead to dilated cardiomyopathy); but others who catch the same virus don't get this chronic illness?

    I saw direct evidence of this: the ME/CFS-triggering virus I caught, which was diagnosed by Dr Chia as an enterovirus, also infected several friends and family, and out of these, two people immediately developed viral myocarditis with heart attacks, and one other infectee developed this illness some years later. I had the exactly same virus, but I developed ME/CFS rather than myocarditis. But why might that be? Why was I protected from myocarditis, but succumbed to ME/CFS?

    I also wonder why chronic CVB myocarditis is not prevalent in ME/CFS, given that is it caused by the same Coxsackie B virus that is strongly linked to ME/CFS, and found in the bodies of many ME/CFS patients. You'd think therefore that ME/CFS patients might be prime targets for chronic CVB myocarditis, but this heart disease is not a common comorbidity of ME/CFS. That is strange, isn't it? So why is that, I wonder?

    It might be that whatever factors predispose patients to developing ME/CFS from a coxsackievirus B infection somehow also protect these patients from developing chronic CVB myocarditis.

    Another example of different responses to viral infections is the fact that 90% of all poliovirus infections are completely asymptomatic, a small percentage of infections lead to some minor symptoms, and about 0.5% of infections lead to full poliomyelitis (and some will die from it). So this virus goes from producing no symptoms at all, to causing fatal illness, depending on the person.

  • heapsreal February 6, 2015, 9:55 pm
    Hip

    @heapsreal
    Those speculations are certainly all interesting ones, but I guess they could equally apply to other chronic viral diseases.

    Why, for example, do some people who catch a coxsackievirus B infection go on to develop chronic CVB myocarditis from it (which is a chronic coxsackievirus B infection of the heart muscle that can cause heart attacks and can lead to dilated cardiomyopathy); but others who catch the same virus don't get this chronic illness?

    I saw direct evidence of this: the ME/CFS-triggering virus I caught, which was diagnosed by Dr Chia as an enterovirus, also infected several friends and family, and out of these, two people immediately developed viral myocarditis with heart attacks, and one other infectee developed this illness some years later. I had the exactly same virus, but I developed ME/CFS rather than myocarditis. But why might that be? Why was I protected from myocarditis, but succumbed to ME/CFS?

    I also wonder why chronic CVB myocarditis is not prevalent in ME/CFS, given that is it caused by the same Coxsackie B virus that is strongly linked to ME/CFS, and found in the bodies of many ME/CFS patients. You'd think therefore that ME/CFS patients might be prime targets for chronic CVB myocarditis, but this heart disease is not a common comorbidity of ME/CFS. That is strange, isn't it? So why is that, I wonder?

    It might be that whatever factors predispose patients to developing ME/CFS from a coxsackievirus B infection somehow also protect these patients from developing chronic CVB myocarditis.

    Another example of different responses to viral infections is the fact that 90% of all poliovirus infections are completely asymptomatic, a small percentage of infections lead to some minor symptoms, and about 0.5% of infections lead to full poliomyelitis (and some will die from it). So this virus goes from producing no symptoms at all, to causing fatal illness, depending on the person.

    I guess this all shows, in general, how poor testing is for chronic active infections. Next would be actually treating them.

    As for what you said about myocarditis from EV, i guess it depends on where the infection goes?
    I think with ME its a low grade brain infection, encephalitis/meningitis type of condition.

    Something i would like to know more about is chickenpox and EV, as dr chia has mentioned it being the great imitator. Chickenpox was one the infections that started my ME and i always wonder if it was EV as i had chickenpox when i was a child also?

  • MeSci February 7, 2015, 4:19 am
    Hip

    There seems to be one or two resisting the idea that ME/CFS patients can recover, perhaps because the possibility of recovery somehow negates the seriousness of this disease, perhaps making ME/CFS look, in the eyes of the public and doctors alike, like a more trivial disease. Whereas this might be the case, nevertheless, it means the resistance is for political reasons, not scientific ones.

    Whilst you make a number of interesting observations in the rest of your post, @Hip, I have to respond to this.

    I suspect that many – perhaps most – of us are actually here to find out how to attain recovery, or at least expedite the development of effective treatments that will bring this about. We long to hear about credible treatments.

    What people object to are the suggestions that our illness can be treated through psychology or exercise.

    I'm sure many of us are well aware that the seriousness of an illness does not correlate directly with its curability. Many serious illnesses are often cured, such as some cancers, pneumonia, meningitis and thrombosis.

  • lansbergen February 7, 2015, 4:40 am
    MeSci

    I'm sure many of us are well aware that the seriousness of an illness does not correlate directly with its curability..

    Yep