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If people do recover from post-viral fatigue syndrome without CFS then why can't I find any?

Discussion in 'General ME/CFS Discussion' started by Frustrated, May 3, 2017.

  1. Frustrated

    Frustrated

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    I have found 0 stories of people recovering from post-viral fatigue on google. This tells me that people who have post-viral fatigue don't get better. They stay sick past 6 months and it never goes away.

    I think the whole concept of "post-viral fatigue" is a BS diagnosis. I just wish doctors stopped lying to people that they will get better when there is 0% chance of this happening. People with "post-viral fatigue" should be diagnosed with CFS immediately, regardless of it's 6 months or not and never be told that they have a post-viral thing that will go away by itself. The 6 months criteria is complete rubbish and I doubt it's even based in anything scientific.

    I'm sick of being told that what I have "could be something else" or that it might magically disappear as I've only been ill since December (almost 5 months ago). My chances of recovery are 0%. 100% of people who are ill at 4 or 5 months will be ill until they day they die. Everyone who has this had only been unwell for 4 or 5 months at some point.
     
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  2. ja21ne

    ja21ne

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    I was diagnosed with post viral fatigue following misdiagnosed glandular fever in 1989. I recovered for 13 years before getting into a situation where a number of stressors tipped me into a health decline again and I have been ill with ME and Pots for 12 years.

    My 13 years recovery included climbing mountains and cycling and walking and being normally active.

    I was lucky in that when I was diagnosed with post viral fatigue, I was in a residential college and could rest fully. No paid work pressures, meals provided, people around me and as much mental stimulation as I could handle to stop me getting bored or depressed.

    So yes a great deal of recovery is possible. And a great deal of rest is needed to recover, which most people find hard to do for many good reasons.

    But perhaps some care needs to be taken once recovery is achieved to respect the bodies limits.

    I had no idea that ME could occur twice in a lifetime. Getting the diagnosis in 1989 meant no info was available.

    I agree that post viral fatigue is a non label. If I hadn't rested in 1989 as much as I did, I have no doubt I would have continued ill for years.

    If you can stop everything and reduce your adrenaline, it might help immensely.

    Programmes like Gupta and optimum health clinic are aimed at switching off adrenaline , reducing wired but tired feelings and starting to get into a healing state so the body has a chance to recover.

    I have left out a lot of details here. If I can be of any further help, let me know.
     
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  3. halcyon

    halcyon Senior Member

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    The authors of the international consensus criteria for ME agree and they dropped the 6 month requirement from the 2011 criteria.
     
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  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I do not have ME, my son does. I had post a post viral fatigue syndrome when I was 17-18. It went away.

    A few months before I was about to start my first year of college the "Russian Flu" was going around. It hit a local preschool fairly hard, most of the teachers were out sick. I was offered a substitute teacher position and took it immediately. The kids were sick. I caught it and developed multiple secondary infections.

    When I went to sign in at the doctor's office, I couldn't remember how to write my name. I had a low grade fever for 9 months; major headache until they did a spinal tap and reduced the volume of my Cerebral Spinal Fluid at 10-11 months; was unable to muster the attention span required to watch TV for about a year and a half; and felt like I had the flu for at least a year and a half. Did I have PEM? Who knows, I was too sick to do anything. Did I have orthostatic intolerance? Yes, but it predated my illness.

    It slowly faded away. I slowly re entered my life. Attended an academically rigorous university, developed a great career, married a wonderful man, and have a lovely family.

    So, it is possible. It just doesn't make for interesting articles and people don't usually want to dwell on the horrors, so they don't talk about it much.

    You may or may not have ME. The duration of symptoms criterion is there because people do get PVFS and recover. The people here on PR are here because they have not recovered, they have ME. Time will reveal whether you will recover or not. I hope you do.
     
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  5. alex3619

    alex3619 Senior Member

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    The reason people don't write about post viral fatigue is, in my opinion and experience, they got better fast. Its a non-problem. There are formal studies looking into this, including the Dubbo studies, classic CFS (not ME) studies. Huge numbers of people get post viral fatigue - almost everyone at some point in their lives. Doctors see them recover. So they try to reassure patients that they will get better. Its also why doctors are distrustful of a CFS diagnosis, quite apart from psychobabble. People get better, why don't we? However by ignoring us in this way, even though trying to be helpful, they often miss the real diagnosis and give us bad advice.

    I have read online many stories of post viral fatigue. I wonder if the problem is not in the search criteria being used, or the language being used in such a way that Google is not finding the stories. What search criteria have been tried?
     
  6. Jesse2233

    Jesse2233 Senior Member

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    My mom had it and recovered after 3 months

    I met a lady today who recovered after several years
     
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  7. alex3619

    alex3619 Senior Member

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    I actually probably had post viral fatigue on top of ME a few years back. It took about eight months for me to recover. I never bothered trying to get this confirmed with a doctor though. Its not like they have a reliable blood test, or can do anything about it. Now this might also have been a worsening of my ME after a flu ... how do we tell the two hypotheses apart?
     
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  8. trishrhymes

    trishrhymes Senior Member

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    My story is very similar to @ja21ne. I had what may or may not have been glandular fever 40years ago. After 6 months I was still very unwell. A friend told me to go to bed and do nothing for 3 weeks. I did so, gradually got moving again and recovered fully and lived a full and active life for 12 years. Then, after an infection I got PVFS, but this time never recovered, and have had gradually worsening ME since then.

    Don't give up hope, and get plenty of rest - you might be one of the lucky ones.
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    People do recover. I did at one point and was completely well for 2-3 years, I though got this whole ME/CFS thing again after I caught a cold which was going around at the time and didnt rest at all while I was sick with that. My recovery had appened through a long period of aggressive rest therapy and my recovery had been from a completely bedbound point

    I suppose you dont read many recovery stories of post viral syndrome as those who recover just tend to get back to their normal lives and stop posting about it all. When I finally fully recovered, I think I just completely stopped posting, I wanted to forget about having been sick.

    or maybe less recover now then before as so many doctors tell people to push throu it??? which is the opposite thing those who recover often do.
     
  10. Valentijn

    Valentijn Senior Member

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    My cousin had it as a teen and recovered after a couple months. Despite being an elite swimmer, she was exhausted just walking up the stairs. But it passed, and she went back to competitive swimming with no problems. My understanding is that post-viral fatigue isn't identical to ME regarding symptoms.

    There's also been prospective studies showing the percentage who are still ill at various time-points after EBV. I don't have the link handy, but from what I recall there were quite a few who were still sick a few months after infection, but many of them (half or more?) were not after 6-12 months.

    I doubt there are forums for post-viral fatigue, due to the largely transitory nature of it, hence there's not going to be much discussion of it online. It's not surprising that people aren't posting their recovery stories when their recovery was expected and indeed happened fairly quickly.
     
    Last edited: May 4, 2017
  11. JES

    JES Senior Member

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    I remember reading about stories of athletes that have recovered from it, here is one:

    http://www.dailymail.co.uk/health/article-1303098/Olympian-Roger-Black-beaten-Epstein-Virus.html

    Also I know about athletes that were presumed to have post-viral fatigue, but found to have mycoplasma, and recovered with antibiotics.
     
  12. justy

    justy Donate Advocate Demonstrate

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    Ive had more than one friend with PVFS who did get better after a number of months. I also do not agree that PWME cant get better. Especially with correct testing and treatment I know of some who have.

    Are those of us in this position a subset? do we have a relapsing remitting form perhaps? I notice that most of us who had long remissions in the past become more disabled the second time around and don't seem to recover again. Do you think the researchers are aware we exist? I'd say its pretty damn important to know that many people appear to recover, only to become extremely ill again at some later date.
     
  13. Jessie 107

    Jessie 107

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    How long did you rest for?
     
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  14. Cinders66

    Cinders66 Senior Member

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    My old school friend contracted a nasty case of flu at Christmas and spent six months debilitated with fatigue afterwards , although I don't think the debilitation was comparable to CFS debilitation. As far as I know she's recovered, working full time etc. If she hadn't have done I assume a CF or CFS diagnosis would have been considered which it hasn't.
    I think a key difference in PVF and CFS or ME is the main feeling is excessive fatigue requiring a reduction in activity In accordance with reduced stamina, whereas my own experience of ME/CFS was nothing to do with fatigue it was staying sick and weak after infection and going beyond limits made me ill. For me, even in the first months I feel a PVF diagnosis would have bern inappropriate.

    Seeings you see To be in the early stages of something and are unsure as to what or if if will last, please take great care of your health and don't push yourself. GPs chirpy messages about recovery can down play the potential seriousness in a muddy area. Whatever you have your best chance is in Giving your body the steadiness, rest as required and stress free time it needed , doing that might make you one of the lucky ones who doesn't develop chronic illness and maintaining your level of functioning with pacing and TLC and optimising your chance of improvement is key in the early years and recovery is possible even in well managed, early stage CFS. .
     
    Last edited: May 4, 2017
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  15. alex3619

    alex3619 Senior Member

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    Sadly I have heard this story far too often. Its common.
     
  16. ja21ne

    ja21ne

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    Over A year! Well largely rested. I was at a residential college and so did lectures on tape in bed and had meals provided. As I improved I did very small walks. The college was set in lovely grounds so I could be in nature easily.. I knew nothing about pacing, but just did what my body allowed me to do.

    It was frustrating to watch everyone else take part in an active college life, but I feel lucky I had the opportunity to rest and didn't feel I had to push myself to work as a teacher. I was 29 when this happened. I had rented out my flat, left my job, and had almost no responsibilities or bills to pay. Meals were provided.This was the key for me. My stress was as low as it could be as an adult, and I could rest a lot. It was tedious and boring and I felt really ill, but the fact that I wasn't running a normal working life at that time is what I believe got me back on my feet.

    Aside from the initial diagnosis , I had no medical intervention at all! I count myself lucky that mo one else interfered. There was total ignorance from everyone around me about what I had, including me. The body just healed itself because the circumstances allowed it.

    Later when I began to be ill again with viruses,I was paying a mortgage, working etc. And had no partner to share the load or the bills and had to cook etc. I stayed in work too long. Resulting in 12 years of ME and pots.
     
  17. taniaaust1

    taniaaust1 Senior Member

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    Some of us were worst the first time round we had it. I was bedbound for 8-9 mths first time round. I still can get competely bedbound now but only usually that one for up to 4-5 days at my worst. I dont crash so hard now as I did first time round (but then I think the POTS prevents me from crashing very hard as I cant do much due to it). I was comatose often in my first time round, I think second time round the longest time I sleep straight has been about 19hrs.. instead of the up to 4 days without waking up at all which I used to do first time round.

    I also had fibromyalgia and all over body pain first time round which I didnt get again when I got ME/CFS second time round.

    I also dont get the 39-40C temps I used to get first time round (I do get feverish but with second time round its low grade fevers rather then high fevers).

    Second time round, I have a much milder version (its not mild but mild if Im comparing my past with this) of what I previously had which was life threatening first time round.

    One thing for sure is that I refuse to allow myself get as sick as I got first time around, I know my ME triggers and I now what I need to avoid and will do near anything to avoid those things which would take my ME level lower. I didnt have that awareness first time around and that is why I ended up so bad, it was pushing myself to hard first time round which caused the 8-9mths bedbound comatose often state. This would of been avoidable had I known more about the illness I had.
     
    Last edited: May 5, 2017
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  18. taniaaust1

    taniaaust1 Senior Member

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    Same here ja21ne.. it was over a year of aggressie rest therapy (2-3? years of it) which lead to my full remission at one point. I had a very bad spot to get back well from, so it took quite a long time to get to that recovery place. It was very very very slow improving. Everything had to done for me so I could just focus on myself and make sure I didnt over do anything. It was the only way I had any improvement. I believe I probably would of died from how bad my health had become if I hadnt done this.

    i did not bath, nor do my teeth, nor leave my bed, nor do anything I found exhausting to do...so I wouldnt even try to sit , or try to hold my head up or force myself to eat. When I did eat, I'd not use cultery as that was too much effort,so I'd eat with hands. I was so sick I stopped worrying about everything. so I think my stress levels dropped too except when I wasnt in bad pain (I basically just slept and was prepared to die, the fact I was going comatose for days at a time in a way may of helped). Too much effort to talk so I did simple signing to request food/drink.

    When I started to improve a little I didnt rush things and stayed at a level which felt right for my body even though i was still missing many things most view as essential. I practiced aggressive rest therapy then for several years till I became fully well.

    I wonder if I could recover and recover fully again if I was in that situation where I wasnt having to push myself all the time as I do now. I dont now days have anyone to support me to allow me to aggressive rest which was the key to my previous recovery. I know I are not resting enough to allow myself a chance at recovery again. (now that would make a good study, put a group of us together with this kind of history and have everything taken care of so the participants arent straining themselves in any way and see how many can make a recovery again?)

    Like u I now have POTS after not having any one to help with things. Anyway, our remissions sound the same though mine took longer as I was had a lower point to recover up from.

    For at least a subgroup of us, aggressive rest therapy is the key for improvement and potentional recovery
     
    Last edited: May 5, 2017
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