New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Can you have CFS without meeting the typical criteria?

Discussion in 'General ME/CFS Discussion' started by Kenny Banya, Apr 9, 2016.

  1. Kenny Banya

    Kenny Banya Senior Member

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    I have had fatigue for 24 years.
    On the odd occasion I had to take a day or two off work, but because I have an extroverted personality, I have been able to hide my fatigue well.
    However, after taking Modafinil for the first time for 6 days in February, getting no benefit, then stopping, my fatigue got much worse (I actually got balance problems while on Modafinil which 'became' the greater fatigue once stopped, 6 weeks ago). My tiredness is such now that I am often in bed & can hardly get anything done.
    I have never had muscle soreness after exercise. I have never had depression or come close.
    I have had rare bouts of irritable bowel syndrome, but often get severe stomach cramps and diarrhoea. I just learnt IBS has some correlation with CFS, so I just started taking B.Infantis last week
    I had a brain MRI 2 weeks ago and it's very healthy. Blood tests over the 24 years have always been clear (eg: iron, thyroid, blood cell count, rheumatoid factor, etc, etc)
    I went on CPAP 3 years ago but it has made marginal difference (the 'second opinion' sleep/respiratory physician I recently saw, reviewed my sleep study and said that my Obstructive Sleep Apnea was so marginal, I could do without CPAP).
    I very rarely get 'sick', so I have had a suspicion that I have had a long term overactive immune system (hyper-immunity?) and incidentally I recently was diagnosed with possible rheumatoid arthritis which does involve the immune system attacking the body and tiredness is a symptom. I did test positive for the gene HLA-B27 which is common in people with rheumatoid arthritis. That said, the rheumatologist feels that I don't have it, as the joint problems are marginal and haven't deteriorated.
    Regardless, the Modafinil was the catalyst for significant fatigue.
    Any suggestions?
    By the way, is insomnia not uncommon with CFS? I have this annoying problem, of 'waking up' later in the day, after being fatigued all day and being able to do more in the evening
    It's really, really frustrating and my partner isn't very supportive.
     
    Comet likes this.
  2. panckage

    panckage Senior Member

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  3. Hope78

    Hope78

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    Hi Kenny,

    were you checked for some underlying infection your immunesystem may be (unsuccsessfully) dealing with? Cytokin levels and so on...?
    Did your check your adrenals (cortisol diurnal profile)/catecholamines?
    If you have IBS there's maybe some underlaying gut dysbiosis/inflammation/leaky gut/histamine intolerance/food intolerances, did you run any tests for this?

    Do you know how/when your fatigue started?

    I don't want to say that's THE reason for your fatigue, mut maybe it's contributing?

    Btw, Modafanil is very, very stimulating, maybe it depleted your adrenals/stress hormones?
    My problems also worsened when I was on Ephedra, it's extremly stimulating and was a trigger for my insomnia/exhaustion!
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    hi @Kenny Banya

    I wouldn't count on any information you might have come across in the media or medical world as useful/helpful in knowing anything about ME/cfs. ME/cfs has only recently started to be seen as something biological requiring medical treatment as opposed to interventional cognitive therapy and exercise.

    It's always good to do as you are doing and try to find out/eliminate any and all other possibilities before thinking ME because there is a limit to how much that can be done for ME patients.

    Fatigue can be common especially for those who are unaware they are ill and overextend their energy or possibly because they have no choice.

    Insomnia is a big issue here and there are many threads dedicated to the topic. There are a lot of knowledgeable people here and a lot of information to be absorbed.

    I hope you find some threads that help you to find answers as you pursue testing. A helpful hint possibly: If you scroll down the main forum page the bottom section -- Resources--has a google site search that helps to find specific topics more easily.

    best of luck to you,
    SD
     
  5. prioris

    prioris Senior Member

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    ME/CFIDS diagnosis is normally done by exclusion. It's primary symptom is cognitive dysfunction (brain fog, memory concentration etc). If you don't have that then you likely have something else. Fatigue symptom can be caused by many other diseases. Maybe you have FMS. Do you feel rib pain. Most FMS people have Costochondritis.

    From my perspective, people who take pharmaceutical medications destroy their health even further. You take pharma medications at your own risk. I think that using natural and alternative things are the healthiest route but that is for you to decide.

    Many people have inflammation in their bodies but don't realize it. I would suggest Curcumin 95, Astaxanthin, Grape Seed Extract and Krill oil taken with main meal. Make sure your diet is healthy
    enough. These antioxidants may help.
     
    Last edited: Apr 9, 2016
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    May I ask why it was thought you might have rheumatoid arthritis? B27 is not associated with rheumatoid but is associated with other rheumatic conditions - Reiter's syndrome and ankylosing spondylitis. The joit problems are of a different type and in some cases without much to see.

    In general terms you can have most diseases without typical criteria, partly because criteria are usually very crudely formulated. The difficulty with CFS is that we do not know what the disease is or diseases are that cause it and therefore need defining. It is not in itself 'one disease'. Very few medical problems are. The main thing is to make sure you do not have a specific known treatable reason for fatigue.
     
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  7. CCC

    CCC Senior Member

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    Rheumatoid arthritis can make you very, very tired, but not as tired as ME/CFS makes you.

    HLA-B27 can also make you very, very, very tired, but still not as tired as ME/CFS.

    Neither in itself causes the degree of cognitive impairment that ME-CFS does.

    Coming from an extended family rife with HLA-B27 - sometimes fully expressed and sometimes not - one thing that has helped the worst-off family members is a low-starch diet. Everyone is different, though.

    Three references:
    Also, this kickas link has a bit about RA: http://www.kickas.org/medical/index.shtml

    Edit: the other list of safe foods that is very helpful for AS patients.

    Hope you sort it out soon.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    @CCC Is feeling very, very tired and having cognitive impairment an absolute requirement in ME/CFS?

    I am asking this in complete seriousness and wondered if someone could be in a subtype that was autoimmune with dyspnea, dysautonomia, and MCAS/allergic reactions as their predominant symptoms (or would a lack of fatigue and cognitive symptoms inherently make it a different illness?)

    This still confuses me so much!
     
  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Just for the record, the low starch diet was invented by Alan Ebringer for reasons that made no immunological sense. It was never properly tested and nobody else in rheumatology has taken it seriously. I inherited his clinic of patients and as far as I could see there was no evidence for the diet being of any benefit - they were still in the same amount of pain.

    What I think may be relevant is that a small proportion of people with B27 who develop Reiter's syndrome (but not to my knowledge Ank Spond) develop fatigue way beyond what could be explained by inflammatory change. Cases I have seen would certainly appear to fall within the range of ME/CFS. Reiter's syndrome is a post-infective syndrome so in that respect has similarity to other cases of ME/CFS.
     
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    We do not actually know how many illnesses are under the ME/CFS umbrella, gingergrrl. The name is just a useful way of lumping together patients with what look like similar problems. I think most physicians dealing with ME/CFS think that there will turn out to be several 'diseases' in there. In my experience trying to make rigid classifications of disease just leads to bad medicine. The key thing is to recognise that there are a large number of people with illnesses that fall into the ME/CFS area and need their problems investigating and sorting out. If someone is very sick and is the only person int he world with their particular disease they are still very sick and need being taken seriously.
     
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  11. CCC

    CCC Senior Member

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    That sounds fine, but those views don't match the experience of my extended family, or that of others who suffer some of the worst consequences of HLA-B27 being expressed. We're unlucky enough to have seen ME/CFS and HLA-B27 in various branches of the family (some related only by marriage).

    One family member suffers badly, and the low (almost no) starch diet makes a huge difference to his life; breaking the diet also makes a huge and unpleasant difference. It doesn't matter to me (or the people Alan Ebringer's ideas have helped) that other experts don't agree.

    As we have both said, the degree of fatigue with ME/CFS tends to far exceed HLA-B27 (either expressed as AS or as IBS), but that's just our limited extended family sample.

    For the benefit of the OP, if you think that HLA-B27 could be activated in your case, you could do what others have done: just try a low starch diet and see if your symptoms improve. You'll know within days.
     
  12. CCC

    CCC Senior Member

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    Totally agree. One day, PR might be left with no members because everyone will have been diagnosed with and treated for something other than that catch-all: ME/CFS.
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think you may be confused about what B27 is. It is a tissue type that is there all the time on more or less all your cells. It does not 'get expressed' or 'activated'. You are born with it. If it is modulated it is usually a question of being turned off during viral infection. It is a risk factor for various inflammatory disorders. I personally suspect that the fatigue with Reiter's, which is one of those can be as bad as ME/CFS, or actually be a subset of ME/CFS.
     
  14. CCC

    CCC Senior Member

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    I'm sorry if the verb wasn't quite correct. I have only extended family experience.

    The extended family experience is that some family members get off 'scott free' and others are severely affected. To this family, it's expressed/activated/turned on/happening/having an effect on some people, and it has zilch/zero/nada effect on others; but it's there either way. People go through life with no effects; others crash and burn from it - as if it's suddenly activated - in their mid-40s, their 70s, and some in their 20s. If you have a non-HLA-B27 explanation, I have an extended family that would love to hear it and perhaps get some treatment beyond what is already mitigating their symptoms. Of course, none of them are on this forum because they don't have ME/CFS.

    I'm not sure why the verb matters in a context of our own experience: try a low starch diet and see if it helps with the IBS. If it makes no difference, then cross that cause off the list.
     
  15. msf

    msf Senior Member

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    I agree with Prof. Edwards that Reactive Arthritis may be relevant to some ME cases; we just disagree about the cause of Reactive Arthritis (and therefore of these ME cases). I developed ME after becoming infected with Yersina, which is one of the organisms that causes Reactive Arthritis. I have had some but not all the symptoms of Reactive Arthritis, and most of the symptoms of ME, so I think there is definitely some cross-over.
     
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  16. CCC

    CCC Senior Member

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    No issues with a crossover, but the OP was asking about whether HLA-B27 could be a cause for fatigue and IBS, and my suggestion was to try a low starch diet because that has helped some people.

    I wasn't arguing about the arthritis connection, just about a claim that diet can't possibly help people with HLA-B27 problems when clearly it has helped people I know.

    (In my posts RA = rheumatoid arthritis, by the way, which can also make you tired. I just hate spelling it out. As the good prof said, rheumatoid arthritis has nothing to do with HLA-B27; Reiter Syndrome possibly does)
     
  17. msf

    msf Senior Member

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    Well, I agree that diet can help, so I won´t argue with you!
     
    CCC likes this.
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    B27 is clearly part of the causation of AS. My thoughts around 1990 were published in Immunology Today in a piece called 'Jeckyl and Hyde - th transformation of HLA-B27' with Paul Bowness and Jim Archer. Since then we have learnt that there is another important genetic risk factor - which involves a cytokine receptor that binds IL-17 if I remember rightly. So getting AS is fairly much programmed by B27 and other genes, which will be shuffled in the family in a different way. Ank spond seems to be pretty independent of any infection - it shows itself when the ligament insertions are coming to maturity. Reiter's is infection triggered. In both cases I am pretty sure that there is a polyclonal activation of T cells involving MHC class I interactions.

    The really effective treatment is TNF blockade, but it does have some potential risks.
     
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  19. Hip

    Hip Senior Member

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    Here is a vague guess at what may have caused your increased fatigue after taking modafinil:

    Modafinil is a dopamine reuptake inhibitor (DRI), meaning that it increases dopamine levels by inhibiting the dopamine transporter mechanisms which remove dopamine from the synaptic cleft. Cocaine also works by this mechanism.

    Now low dopamine has been linked to fatigue, so what I am thinking it that you may have built up a tolerance to modafinil, such that your dopamine reuptake was up-regulated in order to compensate for the reduction of dopamine reuptake that modafinil produces.

    So now you may have up-regulated dopamine reuptake, which will lower your dopamine levels, causing increased fatigue.

    If this is indeed the problem, then it may that your dopamine reuptake mechanisms go back to normal eventually.



    You could try taking some dietary supplements that boost dopamine, such as Q10 200 mg, DL-phenylalanine 2000 mg and alpha GPC 1000 mg.

    If you want to try some dopaminergic pharmaceuticals, then very low dose amisulpride (say 12.5 mg daily), which increases activation of the dopamine D2 and D3 receptors (by an auto-receptor mechanism, which happily does not build up a tolerance over time), has been shown to reduce fatigue in ME/CFS. I have been taking amisulpride daily for several years now, with good effect for my ME/CFS (see my post here).
     
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  20. prioris

    prioris Senior Member

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    I would guess it to be a different illness but that is just my guess.

    Cognitive dysfunction is really the one symptom that defines this disease. It cripples ones mind. I knew that from day one what the primary symptom was. I saw any fatigue as just a secondary symptom. Other diseases can have it also but it will differ in cognitive symptoms i.e. alzheimers, autism etc. FMS (many not all), lyme and me/cfids are 3 peas in a pod that are hard to separate.

    I think some people who may not realize they have it may have very severe fatigue that they think that is all it is. if your sleeping 22 hours a day, how would you know you have cognitive dysfunction. this disease can have different phases.

    From a treatment perspective, i don't care what it is called. the more diseases i can connect my basic root symptoms with, the more ideas i can come up with treatment. i understand that one needs to at least ball park their symptoms with some names for better focus.

    the only reason to get too focused on having a name is if it is for disability purposes.

    i would have you use your inner intuition to guide you to the right answer.
     

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