1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Article: ME/CFS Recovery/Recovering Stories Requested

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 7, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Not a recoverer Cort but can you give some sort of word limit under each heading to keep manageable for you.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    Thanks Enid,

    I think most of the questions can be answered fairly quickly. I would think a paragraph at most for type of onset, degree of debiity and then as much as you want for Comments/advice. Stories are fine as well.
  4. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Type of onset

    acute, fatigue, pain, constipation and feeling sick amonst many other symptoms

    Age at onset

    30

    Length of illness

    first bout, 6 months

    Effective treatments

    complete bed rest, zero undue exsersion and no undue medications, d-tox. healthy fresh food and lots of water.


    Degree of Recovery

    70% recovery of former abilities, returned to work and was able to socialize.


    Comments/Advice for others


    zero help from UK medical profession. relied on family to help serve me food etc.


    Recommended Resources

    this site has been by far the most useful. i relasped last summer, havent rested to the degree i did last year and am still housebound after 7 and a half months


    i also emailed this to the email address provided, keep up the brilliant work cort, this site is the reason i still get up in the mornings.
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    Thanks Andrew. Several people have reported that complete bed rest was very important. For one woman it took a year - with little TV and radio and internet and she eventually recovered. Obviously that won't work for everyone and some people might get worse doing it - but it does work for some people. Good luck!
  6. SOC

    SOC Moderator and Senior Member

    Messages:
    5,185
    Likes:
    6,048
    USA
    My daughter is currently in full remission. This is her info.

    Type of onset
    Very sudden onset flu-like illness with more muscle pain than typical flu
    Age at onset
    12yo
    Degree of debility at its worst (how sick were you?)
    About 5 or 50, depending on the scale
    Length of illness
    7 years, with periods of remission in the first 4 or 5 years
    Effective treatments
    Valcyte (20 mo) + Valtrex (~9 mo and ongoing)
    Degree of Recovery
    95-100%
    Comments/Advice for others
    Mother with same onset at same time but 34 years older, has not responded as well or as quickly. Age at onset and degree of debility at initiation of treatment may be factors in length of or perhaps even overall effectiveness of Valcyte treatment. Long term Valtrex may be required to keep herpesviruses suppressed once the active infections have been dealt with. Rest is crucial.
    SickOfSickness likes this.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    Thanks SOC and congratulations on your daughters recovery! And good luck on yours.....
  8. Vitalic

    Vitalic Senior Member

    Messages:
    108
    Likes:
    46
    I think "test results/tests performed" should be added, for example based on SOC's case one could assume Valcyte is an effective treatment generally, but we do not know what diagnostics were carried out and what evidence led to the decision to go forward with this line of treatment. Because of the heterogeneity of the condition different subtypes may respond better to different treatments, if a patient has multiple active infections then antivirals may allow the immune system to recover and rebalance itself, but there are many without active infections who still have dysregulated immune systems and for whom antivirals would most likely not be as effective.

    Also, I hope supernatural alternative wonder cures will be excluded, I can already see the anecdotal reports of homeopathic miracles and spiritual raiki massage success stories polluting the data set.
    Ocean, SOC and OverTheHills like this.
  9. Astrocyte

    Astrocyte

    Messages:
    70
    Likes:
    35
    UK
    I'd be really interested in recovery/relapse stories too. I think they have the potential to offer v useful information as well.
  10. SOC

    SOC Moderator and Senior Member

    Messages:
    5,185
    Likes:
    6,048
    USA
    Thanks, Cort! I am substantially improved with Valcyte treatment -- from bedbound to largely housebound -- after to 2 years on Valcyte, so I expect that I will continue to improve. It's just slow. I'm looking into immune modulation, if the tests show immune dysfunction, as a way to even more improvement.
  11. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    1) Type of onset - gradual loss of cognitive and physical energy.
    2) Age 60 years.
    3) Degree to completely bedbound with loss of consciousness 3 times.
    4) Length 6 years at worst
    5) Effective treatment - can't specify except those (eg Canadians/Hooper I followed - it's been
    12 years).
    6) Degree recovery - walking (just) - not free of obvious recurring genitory/urinary infections -
    musculoskeletal problems may be increasing.
    7) Comment/Advice/Recommended Resources - Here on PR - latest research findings/
    understandings/drug trialings/members contributions.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    Thanks Enid....good luck with it!
  13. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,231
    Likes:
    1,587
    Australia
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    Thanks Snow Leopard :)
  15. Don Quichotte

    Don Quichotte Don Quichotte

    Messages:
    97
    Likes:
    190
    To SOC,

    Correct me if I am wrong, but it seems that your mother, you and your daughter all suffer from a similar CFS like illness, which causes muscle pain and fatigue. Has anyone considered the possibility of some type of mitochondrial myopathy? (which classically has a mother to daughter inheritance pattern, because the mitochondria are passed from the mother not the father).
    The response to valcyclovir may be due to a direct effect on the muscles and not its anti-viral effect.
  16. charityfundraiser

    charityfundraiser Senior Member

    Messages:
    124
    Likes:
    20
    I am recovering in progress. Do you want my story now or in 3 or 6 months? Or updates at a few time points as it progresses?
  17. SOC

    SOC Moderator and Senior Member

    Messages:
    5,185
    Likes:
    6,048
    USA
    I was more than a little confusing in my post and getting my "mother" and "daughter" scrambled. :D Only my daughter and I in the direct line have been diagnosed with ME/CFS. However], my mother did die of something that resembled MS -- we don't know more because she didn't choose to have any medical advice or treatment.

    It's certainly possible that there is a familial mitrochondrial myopathy. As far as I know, none of our doctors have considered it.

    Our family medical history has some interesting clues -- 3 men in 3 different generations on my mother's side had Hodgkin's Lymphona, which is associated with EBV. My father's brother also had ME/CFS (so not in the maternal line) and is in full remission after 6-8 years on antivirals. These clues suggest an inherited problem handling herpesviruses, but it certainly isn't more than a suggestion. While we've been assuming the AVs effecting the viruses is what's causing the remissions and improvements, it could also be the effect of valcyclovir on the muscles.

    I will have to look into the mitochondrial myopathy issue. Thanks for the info!
  18. Don Quichotte

    Don Quichotte Don Quichotte

    Messages:
    97
    Likes:
    190


    Thanks for your reply,

    The truth is that as much as we know (as compared to the time of Hippocrates) we don't know much.
    Hodgkin's disease has been linked to many different possible causes, but the truth is that no one really knows the exact pathophysiology of this disease.
    Even if EBV (or some other virus) plays a role in some way, it is still not clear why some patients exposed to this virus will develop a prolonged post-viral syndrome, others will develop lymphoma and yet others will have no noticeable evidence that they have ever been exposed to it.

    I have recently become more interested in mitochondrial abnormalities. I think that what we know is only the edge of the ice-berg. Those abnormalities which can range from very mild to severe, be genetic or acquired can lead to dysfunction of almost any organ (again depending on how severe they are). They can probably also lead to further damage in the cellular DNA, which in turn can lead to mutations causing cancer.

    The mitochondria are not only our cells "energy plant",but also the source of important signaling molecules such as those which lead to apoptosis=programmed cell death, which is impaired in many lymphoid malignancies. They are also responsible for the oxidation of various molecules which are involved in many cellular functions.

    I believe that the mitochondrial abnormalities are the result of genetic suspetability combined with enviromental exposure. those will determine which organ will be effected, at what age and to what extent. It is true that classical mitochondrial disease are maternally inherited (that is why I was impressed by what I thought was the same disease in three generations), but some mitochondrial enzymes are actually part of the cellular genome, so can also be inherited in the usual Mendelian way.

    Interestingly, treatment with Co-enzyme Q10 (and possibly other nutrients required for better function of the mitochondria) can reverse some of those abnormalities, even in (some) patients with a pre-leukemic bone marrow disease, called MDS. http://www.ncbi.nlm.nih.gov/pubmed/17064768

    As to your mother's illness, I do not think the exact name of her illness makes that much of a difference.

    "what's in a name, a rose would under any other name smell as sweet"

    I personally do not have CFS, or maybe I do, depending on how you define CFS.

    I have myasthenia gravis (MG) , or maybe I don't, depending on how your define MG.

    I do not have mitochondrial myopathy (MM), or maybe I do, depending on how you define MM.

    My father has had a very mild post-exertional and post-viral malaise for years.
    He recently told me he had some noticeable improvement with CO-Q10 and carnitine, which were suggested by his GP.

    I started taking those supplements, and noticed a mild but significant improvement over the last few months.
    Possibly I may just be going through a better period, but I think it is more than that.

    My neurologist is very optimistic that with the medications and supplements I am taking I will gradually do better. So, hopefully he is correct and my long story will have a truly "happy end".
  19. charityfundraiser

    charityfundraiser Senior Member

    Messages:
    124
    Likes:
    20
    This CFIDS Assn post and Suzanne Vernon's comment about studying people who had recovered reminded me of this thread.

    "How would you define "remission"?"
    https://www.facebook.com/photo.php?....74987762107.90825.47921632107&type=1&theater

    Also, still wondering
  20. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,231
    Likes:
    1,587
    Australia
    Your story at multiple points in time would provide more perspective.

    As for "remission", it's probably worth starting a new thread on the forum on that question. :)

See more popular forum discussions.

Share This Page