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A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    I question the notion that there are PWME with no viral activity. We know that the testing is far from perfect, that analysis by doctors of the test results is often poor, and that there are a lot of viruses that don't get tested for. Very few PWME have been adequately tested or evaluated.

    Symptoms of ME/CFS (I'm excluding for the moment non-PEM chronic fatigue) tend to align with the notion of a pathogen involvement. I agree it's possible that the primary pathogen might be bacterial, but even then persistent or severe bacterial infections often lead to reactivation of or susceptibility to opportunistic viral infections.

    When I see a person with clear CCC or ICC ME/CFS who has
    1) had testing for the major known pathogens seen in ME/CFS,
    2) had those tests evaluated by a doctor knowledgeable about pathogens in ME/CFS,
    3) had sufficient immune testing to identify the effects of viral infection (known or unknown pathogen)
    and STILL shows no sign of viral activity, then I'll give more credence than I do now to the notion of patients with no viral activity.

    ETA: I'll also fall down flat in astonishment that any PWME actually got all the necessary testing and evaluation to completely rule out virus activity. ;)
     
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  2. SOC

    SOC Moderator and Senior Member

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    I had a chuckle. :D Deleting is probably a good idea, though. ;)
     
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  3. Sea

    Sea Senior Member

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    I don't see anywhere that leokitten has claimed that he knows the cure. What he has said is that the best chance of recovery is to gather as much data as possible and treat everything you find to be abnormal as early as possible.
     
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  4. leokitten

    leokitten Senior Member

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    Sorry I did not mean or say that. I said repeatedly that you need to get as much data/information possible with lab and other tests, clinical data, examinations, scans etc and then decide on how you would like to approach treatment based on this information, or not, but having the information is a definite plus versus knowing nothing about your version of the disease. If you have lab work and symptoms showing chronic viral or bacterial infection then it is likely that they are playing a role I think we can agree on that.
     
  5. leokitten

    leokitten Senior Member

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    Thank you
     
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  6. SOC

    SOC Moderator and Senior Member

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    Indeed, data is critical. I love data. Data makes me happy. :D

    However, the real-world situation is that too many doctors refuse to do the testing (testing is unjustified in ME/CFS per the CDC, NHS) or don't correctly interpret the results if they do test. Maybe we should take a poll to see what proportion of ME/CFS patients who were tested were told by their doctors that high IgG titres for EBV, CMV, HHV-6 (maybe others) are meaningless. ;)
     
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  7. chronix

    chronix

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    Look, we're on the same page here. There was a misunderstanding.

    I agree with leokitten about some advice on this board. It's a pet peeve of mine to hear the term "adrenal fatigue" for example.

    But there's a lot of good information and advice, the majority is in fact. It's the best we can do at the moment, until this disease is solved.

    I hope you recover quickly and help us out, we need all the soldiers we can get!
     
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  8. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I just got lab work back. I tested positive for CMV, EBV, HHV-6 and had some other abnormalities and I was told by my doctor that there were no significant findings.

    I'd be lost without information I get from people here. And I would think if someone was really off-base, other's would tell them.
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    I'd like to say that for most of us, much of the research out there we cant make heads and tails of it, eg I was in a study 7 years ago and once published, it was too complex for me to understand it,I couldnt even get throu reading it. Ive followed ME/CFS research since the early internet days (I got ME/CFS 17 years ago) and I still cant make sense out of half of the studies out there thou I had a very good education (I got sick half way thou a 4 year diploma which included medical subjects). If your brain still can make sense of everything you are reading, you are very lucky. You also being already a researcher would be far more able to understand the research then many of us (expecting the very sick to suddenly become researchers?). Much of the research out there too is so complex even my own doctors cant make sense of it. Expecting very sick ME/CFS patients to be researching themselves is a bit much. I think you have very little idea of just how badly this illness is for many.

    If what I said is irrelevent to what you've said, its cause Ive got confused on what has been said due to how my brain has been affected. Just trying to remember what Ive just read in your posts and reply to it, without quoting the parts, is hard for me.

    Secondly. MOST of us cant get the tests we'd like and know we need. We arent doctors and hence we cant make the more naive doctors who dont know as much as we do about this illness test us. I have severe POTS and spent 6 yrs trying to get a tilt table test (I still havent had one). Ive seen 30-40 different doctors in the years Ive been sick (many of them specialists). Drs generally do not know what to do about me and refer me on.. I get refered on, refered on, refered on. Ive had to work out so many of my own issues, I had to do my own poor mans testing for POTS and then convince a dr to give me treatment for it (thou drs still havent tested me for it).

    Its a case here of a very sick patient having to manage her own medical problems (im sure there are many of us having to do that at this site), both in diagnoses and then telling the drs how it needs to be treated. (the drs dont get time to do research of their own.. Im alone). I even had my severe orthostatic hypertension ignored eg sudden BP spikes of up to 170/138 as the doctors wouldnt listen enough to test me when I was standing up and kept insisting BP is only taken when someone is sitting (now its happening when Im sitting too so finally a dr the other day when to her shock saw my BP was 178, told me she was refering me to a specialist for my BP dysfunction.

    Note Ive had this issue Ive been just trying to help myself now with the BP issue for 7 years!! no thanks to drs who wouldnt even take a standing test result expect one who did after I'd bugged him for 4 years to take my BP while I was standing and then freaked at seeing what my BP does in 1min of standing when he FINALLY listened to me and who refered me on to yet another specialist, a specialist who didnt believe the drs letter and didnt know how to test orthostatic issues and just went "that isnt possible" .

    Note that was a professor at my cities main hospital who specialised in autonomic issues and then kept saying I didnt have pure autonomic failure (which I already knew!!) as my BP instead would be going up when laying down and not standing. She then (not really expecting an answer) asked me to explain to her how my BP would be going up high on standing (and thou I'd researched all that, I forgot with my bad brain so couldnt explain it). So I was back to square one. untreated severe unusual potentially lifethreatening issues with no doctors listening (unfortuantely the dr who had finally listened to me and seen it for himself and had refered me to that professor, he had a stroke so I couldnt get back to him).

    I even took info in to the professor from a well known dr overseas who specialised in orthostatic hypertension in ME patients (Dr David Bell) but the professor said that wasnt right and just kept insisting I couldnt have issues like this going on "its not possible, its not possible for a POTS patient to also have high BP" doh.. hyeradrenalic POTS patients do commonly have high BP. The lack of knowledge coming from a professioner in autonomic dysfunction was astounding. (Its very likely due to your occupation, you could find drs etc paying more attention to what you say then what the average ME/CFS patient experiences with drs).

    I also currently have the issue where Im having no treatment management (thou Im on drugs which are supposed to be monitored) as I cant get to any of my specialists as I dont drive and I cant take public transport and I dont have enough help to get places (I collapse with my autonomic dysfunction). Your post came across as making it sound like patients themselves are sick due to not doing the right things.. for many of us we are simply STUCK. Stuck not having doctors who know enough about this illness, stuck with doctors who wont read the info we take in to them about it, stuck cause we cant even get to good doctors. My condition is in decline.. cause day by day Im overdoing it just to do the necessarily things in life as I cant get enough support and arent getting the treatment I need.

    I can not fly to another state to see a more knowlegable dr (last time I fly anywhere alone, the airport security was called as they tried to kick me off the plane, I was looking so sick ..struggling just to hold my head up and tremoring and spasming badly.. near a seziure that they tried to refuse to fly me but I refused to get off.. it was a nightmare and I made the plane very late).

    Yes Im sure wrong info is giving here at times (one wouldnt expect it to be 100% right at a website like this) but I'd like to point out that the quality of info here in general is generally very good if I compare it to the stupid things Ive heard coming from drs mouths and out of other mouths of the general medical people and of places like the CDC in which exercise is recommended for ME people (their website is better then it was, still not good enough thou and not helpful for those like myself).

    A dietian I'd been refered to one time (after this I never went back to her) told me that ME/CFS is caused by us watching too much TV. (I was too sick to even watch TV for a very long time and didnt even have a TV or computer for years). An Occupational Therapist made me much worst.. after her help and advice I was left again not even able to feed myself with a fork.

    Anyway.. compared to what Ive experienced elsewhere.. generally the advice here is very good and Ive found better then the advice Ive got from the medical profession who have greatly endangered me and not only not been helpful much but at times have made me worst (I ended up with a prolapsed bowel after being given a drug commonly used in ME/CFS for sleep but this drug had the physiological affect of slowing down bowel peristalisis when I already had IBS-C due to the ME). Is it my fault I didnt know what physiological affects on the body drug does cause I didnt research it? I found out by wikipedia only after it gave me the bowel prolapse and I was then due to that needing enemas daily (so yet another specialist then had to end up in my care). Its isnt ME/CFS patients fault not knowing these things but drs themselves with not doing enough or being careful enough with this patient group. I dont know about your case but I get OVER 90 different symptoms with my ME and can only research so much!!!.

    If you see something being said as wrong... you should post and say so. People are happy to get good info. I hope you hang around here if your experience ends up showing you that you are wrong. Sometimes this illness even if one is onto it from the start, isnt so easy to fix. (Many of the things going wrong can be very hard to find * and with such a dysfunction system, what is happening one day may not be happening the next and doctors just do not look for many things).

    eg I'll give you just one example of something which someone could have issues with but which would be missed in most (I have many issues which have got missed for the 17 years since I first got ill). eg I have molybdenum deficiency (an essential trace mineral. We are supposed to get that from diet but in my own case I have a gene which affects it.. I I suspected this gene issue so had DNA testing done which showed I was correct and do have the gene issue). I knew I was deficient in the first place throu a hair test (which I know you probably wouldnt believe in)and due to the result of the hair test, I then supplemented it. I then had a 30% improvement with my brain, I hadnt been able to do maths in my head for many years but within 5 days of supplementation of it, I could do maths in my head again.

    If you really want to get well you may have to keep an open mind and be open to things you would of previously never considered, as these can lead to knowing other things to look out for which can get backed up by proper medical testing. Most of us are not just researching accepted medical things to improve but going one step further to try to make sure no stone is left unturned one could say. If we are still sick, its certainly not at all due to a lack of trying. Some of us may never get to the bottom of all our problems till science improves more or drs become far better at dealing with ME/CFS. (even our best specialists have lots of ME/CFS people they cant help much).
     
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  10. LiveAgain

    LiveAgain

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    Can I ask a question? How do we know those IGG titers ARE significant? Have they compared our viral load with that of healthy people or some control group?

    I also test high on EBV and HHV6 IGG (including early antigen on the EBV). CFS specialist says these are significant, mainstream infectious disease Doctor says no - these indicate past infection only.

    She said the way to really check is PCR, see if it's in the DNA. So she tested that way, but ran the wrong one - I forget now if it was quantitative or qualitative, but one can pick up past infection and I told her that and asked to have the other one run and that came back completely negative for EBV.

    Anyway, I'm not saying viruses aren't the problem, but how do we know? Have they ever compared our IGG's to other groups to see if we have higher loads? Have there been any studies like this?
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    I'd like to add that as far as treating all things at once goes... my specialists have said cause I have so many things going on that if we did that it would make it very hard to know what was working and what wasnt (there is also the issue that I react badly to many meds and also that treating something could be negatively affecting something else.

    I have many things in which treatments for contradict each other). So we only try to treat a few things at a time. You may have a case which is far simplier to treat then most, this illness hits at different degrees (I was completely bedbound and completely unable to care for myself a year after getting it.. I couldnt even walk to a toilet.

    The thing which made me that bad was I tried to continue studying .. research was bad for me too. Taxing my brain led to my big bedridden crash. Ive since learnt to pace my brain work just as I need to pace physical things too. I cant overwork my brain).
     
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  12. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I couldn't read a lot of what you said. Because with my disease infected brain I can't read more than 2 or 3 sentences in a row without a paragraph break.

    But if there were enough people who said they got good results from taking capsules of cat poo, I'd try it.

    As sick as I am, 19 years now, with no doctor car in about 16 years, I'll try pretty much anything if there is a chance it could help. You learn about things through other's experiences.

    If I had a refund of the money for stuff I've had to toss in the trash because I had a bad reaction, then I'd have enough money to see a doctor who could help, if I could find a way to get there.
     
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  13. SOC

    SOC Moderator and Senior Member

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    We don't know for certain what viral load is significant for us. The only thing certain in this illness is that there's no certainties.

    The rule-of-thumb thinking is that (relatively old) studies have shown that (what they thought were) healthy people can have relatively high IgG titres to EBV, CMV, HHV-6, so high titres don't mean anything other than your immune system was exposed to the virus once and is now producing antibodies. Ho hum.

    The problem is, the actual information is quite limited, as far as I can tell. They didn't sort by age, length of time since exposure to the virus, undiagnosed symptoms, and loads of other possible confounding factors.

    The questions arise when the patient is clearly NOT healthy, or has immune abnormalities. Some more progressive doctors -- especially those who've actually had to rethink their view of virus infection since HIV hit our awareness -- are thinking that the all-or-nothing rule of thumb is grossly overused.

    Here's some of the thinking I've heard about. There's probably a lot more. It may not all be perfectly accurate, but you'll get the idea. :)
    1) While high IgG titres may be normal in healthy people within a few years of infection, a high titre in a person whose initial infection was probably decades earlier (the case for most adults who had their primary infections of HHV-6 and CMV before age 2, and EBV before age 21) is suspicious. Antibodies do tend to drop off slowly over a long time. Why else would people need the shingles vaccine (aka chicken pox booster)?

    2) The primary weak assumption in the high titres = no big deal is that everyone's immune system can keep latent viruses in check -- except for people born with severe genetic immune deficiencies. That idea has changed since we've learned more about milder immune deficiencies and acquired immune deficiencies. Unfortunately many, many docs are still using old information.

    3) High titres in healthy people are no big deal. High titres in people with symptoms of the illness, on the other hand, can signify an illness state. Too many doctors forget that caveat. :rolleyes: Some (all?) labs that test for herpesviruses have a qualifier in the analysis that says the test should be used along with clinical signs to evaluate the presence of active infection. Many docs ignore that part, especially if they don't believe ME/CFS patients are really ill.

    4) Most doctors assume ME/CFS patients have normal immune systems and can therefore keep herpesviruses in latency just like everybody else. I've had more than one doctor admit that if I had HIV, s/he'd be concerned about my high titres. "But HIV patients have immune dysfunction. You don't. So it's not an issue." Note that neither doc had any immune testing done to justify their assumption that I didn't have immune dysfunction. They just assumed and acted on their incorrect assumption.

    5) Testing for EBV, CMV, HHV-6 is far from perfect. HHV-6 testing, in particular, is questionable. Not bad, but certainly not 100%. See this information about testing at the HHV-6 Foundation. It will give you some idea of what the issues are.

    6) Antibody titres are an indirect measure. They don't measure the virus itself, they measure how many antibodies to the virus your body is producing. What if your body doesn't produce antibodies properly as in immunoglobulin deficiencies? Then your antibody numbers would not correlate (as well as assumed) with your level of infection. There are a number of other issues with indirect measures, but I've now used up all my current mental energy, so I'll leave it at that. :(

    Bottom line -- antibody titres are useful, but not 100% conclusive measures of infection. Even PCR on blood has it's limitations, such as in cases where the infection is mostly tissue-based so the viral levels in the blood are low even when tissue infection is high. (Or something like that.... my brain is giving out. :rolleyes:)

    Folks, we have no guarantees of anything in this illness. It's true in medicine in general, and even more so in ME/CFS. We have to do the best we can with the limited data we can get. That includes not taking anything at face value.

    Ow. My head needs a rest. :ill:
     
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  14. LiveAgain

    LiveAgain

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    I appreciate the time and thought you put into this response Soc. I read it 3 times and will probably need to read it another 3 to absorb into this foggy brain, but learned some things. But my question remains. Sorry! I'm just a normal, not really sciency person trying to understand. :)

    I know there are other factors involved, but CFS specialists seem to think results of virus testing alone are significant. That was my experience. I was told EBV was probably my big problem. I just want to know WHAT information this is based on?

    I looked at the HHV6 Foundation/Montoya "Almost 100% of the population has latent virus and HHV-6 antibodies. The important question is: are your antibody levels abnormally elevated? If you have a titer of 1:640 or above at Focus Diagnostics, then this raises the level of suspicion." My question is where does this number come from? What is significant about 1:640? Do healthy people not have levels this high?

    Then it says, "If your result is in the top 20% of a normal population, then this could be a clue that your HHV-6 is “active” instead of latent. Is the 1:640 part of this upper limit of normal or is this where things get abnormal? Currently, there is no standard threshold to evaluate which values are “elevated”."

    They seem to be saying high numbers may equal "active." But then admit there is no normal standard. It's confusing. But since they recommend Valcyte, obviously they believe this is an active virus and is causing at least some of the symptoms. If you have this high number, you may have this active virus, here's some Valcyte.

    Can't they just test a bunch of healthy people and see what their numbers look like? If many of them have titers over 1:640 and are doing just fine then it seems these results can't mean much. I don't really understand the thought that healthy people can have high titers and it means nothing, but it's significant for us. Then all we have is a bunch of symptoms and test results that may or may not mean anything, especially if every Tom, Dick and Harry also has results like ours.

    I know there are other factors and this is complicated, but I'm just talking about the virus issue. If there are any studies where they compared our titers to healthy people please share.
     
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  15. SOC

    SOC Moderator and Senior Member

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    Well, there's your problem! ;) You're looking for logic and solid data where it simply doesn't exist. :)

    Yes, they could do a load of research testing all kinds of people with all kinds of illnesses at different ages and stages, but it would cost a million billion or two. No one cares enough to do it or even fund it. It's not considered sufficiently interesting or high priority.

    There is s***load of medical research that needs to be done, not just in ME/CFS. The money, resources and will aren't there to do the vast majority of it. That's the sad reality.
     
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  16. taniaaust1

    taniaaust1 Senior Member

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    Same here. I got what Ive been told by the drs is probably herpes all inside my mouth (over the roof of my mouth) and dr said he wouldnt treat it unless its happening at least 6 times per year. Ive had it 3 years this year, it reactivates when I get too run down and comes on with a sore throat.
     
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  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    L-lysine is a pretty good treatment for some of the herpes viruses if your doc won't cooperate. You can take 3000 mg for shortish periods I am told.

    Sushi
     
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  18. August59

    August59 Daughters High School Graduation

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    I have also tested very high for EBV and HHV6, but I can't afford $375 an our to go to a CFS clinic close by to get a prescription for Valcyte. On the other hand, I can't find a mainstream doctor that will consider prescribing Valcyte for me.

    Dr. Montoya has treated 2 people that I know of with Valcyte for at least a year before their HHV-6 titres started to drop and they started to really feel an improvement. No where near normal, but much better than bedbound or housebound.
     
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  19. SOC

    SOC Moderator and Senior Member

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    Yikes, that's steep! I assume your insurance won't pay for it? No hope of finding a less expensive ME/CFS doc?
     
  20. ukxmrv

    ukxmrv Senior Member

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    I wonder if this is why you say that you see so much advice you don't agree with on the group

    So many of us are long past the stage of catching it early enough and sick from well before there were any tests or treatments. Some of us were made worse early on from the advice of mainstream doctors.

    Dr Ramsay, who I was lucky enough to meet when he was alive, also said his patients who tackled the disease early on and rested had the best outcome. That was decades ago now and many of the modern tests and treatments still a dream to those of us ill from that time.
     
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