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Very severe ME

Discussion in 'General ME/CFS Discussion' started by Marky90, Oct 2, 2015.

  1. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Hi guys

    I`ve been reading some horrible stories of patients who are totally bedbound and also seem to have 50 + symptoms to deal with.. E.G horrible pain, all kinds of sensitivities, allergies you name it.

    And it gets me pondering.. What the heck is going on pathologically with that kind of severity? Some kind of damaging autoimmunity? Lyme? Both?

    Has this been disussed here before? Gets me curious.
     
    Last edited: Oct 2, 2015
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  2. Sushi

    Sushi Senior Member Albuquerque

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    I think that you may find this individual treatment threads. I know people have written about it. Sorry, I can't point you to it.
     
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  3. Effi

    Effi Senior Member

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    @Marky90 Different groups are studying severe ME patients now, but they haven't published anything yet (cause I think they only just started). Through these studies I think we will find out a lot more about the disease processes in severe ME specifically, but also about ME in general. I think about very severe ME patients a lot, they are the most invisble group and I think the less helped, although they need the most help. It is heartbreaking.

    Some more info about the OMF's Severely Ill Big Data Study:


    UK me/cfs Biobank is going to be focusing specifically on severe ME patients too : http://www.meassociation.org.uk/201...lood-samples-to-be-stepped-up-21-august-2015/

    I think there's more but I can't find it right now. I'm feeling very hopeful about these endeavours. I suspect that if there is a biomarker or a specific disease process to be found, it would be more clearly present in someone with very severe ME. Let's keep our fingers crossed!
     
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  4. lansbergen

    lansbergen Senior Member

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    I was dying and have improved a lot. The only things I did was trying to avoid situations with the risk of high infection pressure, try to stay within my limiits and taking an immunemodulator.
     
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  5. K22

    K22

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    I'm bedbound and the important thing to recognise is that many of us started off like you guys mild - moderate with your symptoms and limits. It's also arguable that many of us could have stayed at that level or got better if we had been diagnosed earlier and managed better from the start. Ofcourse there are some who start off from week one in bed and some of them actually are allowed to convalesce, as they are so obviously unwell, which can see good outcomes over time. However if you look at some of those who end up in a really bad way eg the late Lynn Gilderdale (uk) or the dutch dr who recently published a study of his own problems with walking - they were harmed by GET often aggressive, which causes a severe worsening and falling down into horrific levels where the body seems to be sensitised and intolerant to the basics of life eg light, touch , smells etc . I myself didn't have GET as such , getting ill early 90s that wasn't around so much then but a push through fatigue attitude certainly was - & after years of crumbling I wound up in bed. That was bad enough but when I had to carry on exerting I fell through the floor into the hell beneath of very severe m.e


    My belief is that instead of seeing severe m.e as this inexplicable horrible other, far removed from those who can still work part time or potter about , that in fact severe m.e or at least a good portion ofit, is perhaps better seen as damaged or advanced disease whereby the natural disease processes, common in all sufferers, have churned away or been aggravated by poor management and exertion l to produce extreme illness. I do think there's obviously subsets and some from onset have much higher illness burden and complexity. Perhaps they have multiple pathogens or their bodies just got hit harder and broke down in more ways , so yes there is a group who seem to be more vulnerable. Perhaps having POTS on top or having the autoupimmune form rather than primarily the muscular /ANS form leaves groups much more vulnerable with bad management. I don't think though that severe m.e, as in bed bound with ghastly pain + sensitivities, is a different illness and the rare research into the development of severe m.e has indicated poor early management as the biggest common. risk factor for developing so we know exertion repeatedly exacerbates the underlying disease and disability. Approaching people who wound up severe (as opposed to early onset) as damaged to me would help open up more research avenues where we know for eg rituximab isn't showing good signs.

    I too am thrilled at the end me/CFS project applying excellent science to this neglected group. It is the tragedy of this illness that washing ones face can cause worse PEM than playing badminton or cleaning the house used to in the earlier stages. It's shocking how m.e health can crumble to nothing, enfeebling young people + also how this group has been side lined + ignored rather than held up as central to m.e campaining. In uk too much focus is on trying to argue against the psychs evidence for behavioural therapies for the ambulant with a vague cfs & not enough emphasizing what a serious, disease m.e is. Holding up the severe smashes through psychobabble + "is it real" questioning more effectively than anything& we could have been doing that for 20 years.
     
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  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    The problem in defining severe ME is a problem for research accuracy and biobank sample collection:

    1) Biobanks will never find a 'cause' because they are based on a diagnosis of fatigue of unknown origin, not doctor proven abnormal neurological/immunological signs known to occur in someone with diagnosed Myalgic Encephalomyelitis. This anomaly ruins the research pool of ME patients who need to be research, massively.

    2) Diagnosing 'severe ME' with no tests, and then preceding to take blood from someone trapped at home or in bed has a number of physical and psychological causes does nothing to reduce the muddle. This again ruins the research pool of ME patients who need to be researched, considerably.

    With the two factors combined, a claimed research group of 'severe ME' (such as when claiming a finding or pathogen has been found) may only be as high as 20% with the actual condition. This is because tests aren't run to make it more likely the person has 'severe ME', rather than 'severe Lyme' or 'severe nutritional deficiency' or 'severe mental health problems - all of which can legitimately be experienced as 'severe ME', as no tests are required to confirm a diagnosis of ME (via CFS, via CFS/ME criteria used in UK and the world - as they're based on unexplained long term fatigue).

    Solution 1: Use as strict criteria as possible
    Use ME-ICC and CC CFS criterias to filter patients - this will increase likelyhood of physical causes found in 'CFS' patients over the decades. For example, we know that biomedical findings in 'CFS' tend to be found by doctors (who are also researchers) who accept ME is 100% organic (De Meirleir, Peterson) and not by those who are trying to prove the opposite (pschy lobby) and the use of Fukuda CFS (CDC).

    Solution 2: Use doctor witnessed tests for 'signs' of disease and verified abnormal test results
    A diagnosis in 'severe ME' research cohorts should require a doctors lengthy medical report and physical tests demonstrating signs of neurological disease (such as proof of Autonomic Dysfunction, gait changes, cognitive dysfunction etc) and the classic immune activation signs of inflammation in blood markers (cytokines and chemokines) to produce a real pool of probable 'severe ME' patients.

    This can be done. Someone bedridden can still have their autonomic nervous system tested via an ECG and a computer (heart rate variability test performed). It's not a TILT test, but it is at least a verified test and an objective measure. The same would go for a neurological exam, in which PWME (severe) can have subtle changes on. (Dulled or brisk reflexes, droopy eyelids, facial palor, eyelids twitching after extensive talking, delayed pupil response to light changes) that aren't noted in NHS UK 'CFS/ME' patients based on fatigue, but are seen in people with severe ME.

    Then we can research the patients, with more confidence they are likely 'severe ME', rather than just because of their status of a tick box in a piece of research where a blood sample is analysed because a patient has ticked a box that says 'I am housebound or bedridden'.

    Until people do this, to says someone has 'severe ME' means little at all and to get blood from 'them' in terms of finding causative pathogen or defect, a 'biobank' is largely pointless in terms of furthering science and treatment.

    Heterogeneity wrecks ME via CFS and via very weak diagnostic criteria and calling someone 'severe' because their blood is taken because they are either bedridden or housebound.

    My proposal is common sense, but much more costly, which is why no one will do it. It's much easier to stick to what hasn't worked for 40+ years.
     
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  7. lansbergen

    lansbergen Senior Member

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    That might be a simple test for GP's to do.

    I am not severe anymore but I still have pupilreflex problems.
     
  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello. A question please. Did you ever notice:

    *The more brain exhaustion you feel, the more noticeable to others (or yourself) your sluggish pupils become? *
    I ask, as this might correlate as well with the severely affected. (E.g the more severe you are, the more exhaustion the suffer usually reports at rest, or after activity).

    Keeping on the eye pupil topic, I've fallen down the stairs before when I followed (a healthy person) down a staircase with low light and literally missed the stairs and fractured my leg. I screamed in pain at the time, but now I can laugh at it in a way, as it just shows my pupils didn't open up in time to 'see' where I was going. :rofl:

    With regards to 'brain exhaustion' worsening pupil reflex responses....

    I find that by the end of a day, then it would be noticed by a doctor if they looked (It was once by chance as I had a late appointment in the hospital and as a doctor turned the light out he said to me ''do you know you have sluggish pupils'') I went home and then tried to replicate this during the day and couldn't, until I saw it was worsened by brain exhaustion. (At the start of a day, it wasn't as noticable or maybe as in the day it's not dark?!). You could argue that a part of the brain exhaustion in ME, is simply central nervous system dysfunction worsening, e.g. Dysautonomia.

    Either way, it makes me wonder if we deplete our neurotransmitters simply by being 'awake'? Hence we get PEM or relapse from physical and mental exertion. I believe testing for neurotransmitters in blood or urine is not very reliable as reflecting brain levels, so I doubt we could do this as a reliable marker in PWME to see if they are low?

    Also, if I lay in dark room at night (not totally dark as all I can see is 'stars' (tiny flashing bits in my vision) and it freaks me out) , the more exhausted my brain is (e.g. using this form to type a message that sometimes takes hours) doesn't just induce vertigo and other neuro symptoms, but when I open my eyes from closed I see a momentary flash of white light. Imagine a small circle, then expanding into a circle with a hole in it, then dispersing. I think the slowest I've counted it, is 0.5 second. From eyes closed to eyes opened, (the white hoop of light I get in the dark at night after brain usage is maxed out on an especially bad day).

    Have you ever experiened this or heard of it maybe? I think the flash of light is probably my pupils not reacting at the correct speed, so for a split second I cant' see the image infront of me (when opening eyes, the 'image' infront of me is obscured by a 'flash' of white light that expands open too slowly, like a camera iris - then I can see the room fully ). This happens in a split second, but it's chronic, just varies in severity.

    I've noticed this is much more pronounced after extensive 'thinking'. Until I became severe, I never had this.

    Do you think it could be 'filmed' for research? I was thinking of a night vision camera, but don't know if this would pick up delayed pupil response (literally on camera) unless it's in slow motion? and perhaps that flash of light I see, is something else my brain simply perceives and cannot be 'proven'. Either way, I thought I'd share it. No doubt you'll all think I'm more loopy than you do already. :lol:

    I'd love to know if this phenomena is just me or is in other sufferers, or maybe really is associated to 'severe' ME, or 'just' autonomic dysfunction. Thanks.
     
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  9. lansbergen

    lansbergen Senior Member

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    Don't all reflexes become worse with exhausion?

    My pupils are the opposite of yourse as were the animals. They do not close fast enough when light falls in at the eyes.

    In the animals I got suspious when an animal stayed still long to measure a ditch and stil sprung in it. Even with my primative methode I could see what was wrong. Then I let it check by a vet and he saw it too.
     
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  10. geraldt52

    geraldt52 Senior Member

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    It's a very interesting question. I've pondered it too, and I bet that the handful of doctors who've struggled to understand the illness have as well.

    If ME/CFS is a "progressive" illness in the usual sense, well I've been sick now for 31 years, so why am I nowhere near as bad off as Whitney Davis? I don't believe for a minute that it is anything that I've done, or not done. I have had one major remission, with no obvious cause, and scores of relapses, with no obvious cause, but the trajectory, as viewed on a long scale, has clearly been ever downward. I can only hope that I don't eventually end up as disabled as Whitney Davis...as I haven't seen anything that stops the downward spiral.

    I do think that it is right to study the severely ill...it only makes sense that the mechanism at work would be more obvious in them than it is in those of us less affected. Still, the question remains as to how many of us have the same illness. I don't know whether Rituxan will end up being an effective treatment, but I have high hopes that it may finally nail down at least one mechanism at work, and determine how common that mechanism is among us.
     
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  11. lansbergen

    lansbergen Senior Member

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    Lower infection pressure? Stayed within your limits better?
     
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  12. Bob

    Bob

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    For ten years I had no bizarre complications - I simply had a straightforward version of ME with post-external exacerbation, flu-like malaise, exhaustion and hideous brain fog. And it was mainly moderate (with meticulously careful management) but fluctuated between mild/moderate/severe.

    Then, a year ago, I had a severe reaction to some probiotics, and I now have severe symptoms and am almost entirely bedbound with a wide range of complications (which started one after the other over a few months) which I never had before as follows...

    · Food intolerance (eating food can sometimes cause all my general symptoms to flare, including neurological symptoms - I have a restricted diet to manage this phenomenon).
    · IBS (severe at times, but managed successfully with a restricted diet).
    · Neurological symptoms (This fluctuates and is not always a problem, luckily. It's exceptionally incapacitating and distressing and deeply unpleasant. Difficult to describe but includes light and noise intolerance, and various neuro-psychiatric symptoms. Sometimes I'm intolerant to any mental stimulation including opening my eyes.)
    · Joint pain and inflammation (Including back problems and severe hip problems. Sometimes I can't put any pressure on my hips without antagonising them. If i walk up more than 3 to 6 steps/stairs then it antagonises the hips and I experience a major crash/relapse.)
    · Widespread non-localised intense pain.
    · Orthostatic intolerance.

    I can't say it's been much fun.

    I think my personal experience is very intriguing, from a general point of view, because it suggests that ME/CFS may not be as heterogeneous as I had thought - I find it difficult to believe that I've had two entirely distinct diseases - my guess is that I have the same (or closely related) disease process with two different manifestations. In which case, I think that is good news for our community, because it suggests a certain degree of homogeneity, despite widely differing manifestations.

    I'm interested in why I've now apparently had two different types of ME. I suppose if we knew that then we'd know a lot more about ME.
     
    Last edited: Oct 3, 2015
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  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Wow some really valuable insights here^ thank you for your contributions. And the studies mentioned above is precisely what is needed!

    @Jonathan Edwards, in rtx for RA, did you see differences in responses after severity? If so, any thoughts around why that might occur?
     
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  14. geraldt52

    geraldt52 Senior Member

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    It's a very good point, Bob, and one that doesn't often get mentioned.

    My wife and I are both sick. I was sick first, 31 years ago, her about 5 years later. Early on, we shared only a handful of symptoms, and even those were different in subtle ways. So much so that it wasn't at all clear that we had the same illness...although the crushing, completely unexplained and unreasonable fatigue made us think so. With every year that went by I seemed to pick up some of her symptoms, and vice versa. At this point we are much more the same than different. Physically, I have held up better than her...cognitively, she has held up better than me. Maybe there's something that could be learned from us, or I think more likely each of us just had our own strengths and weaknesses to begin with.

    I think that you are spot on that we as a group may be more homogenous than it might appear. Along the way we may appear quite different, but maybe nothing separates us from where Whitney Davis is but time.
     
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  15. Sushi

    Sushi Senior Member Albuquerque

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    Bob, do you mind telling us which type of probiotics you took? I know we all have "different guts" but if correlated with a good gut test, this might be interesting.
    One thing that is becoming evident is that the gut is involved for most of us. I had a stool test that tested the DNA of about 67 bacteria, and based on the results had some targeted gut treatment that "strangely and quickly" relieved a number of my ME symptoms.
     
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  16. Bob

    Bob

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    I seem to be highly intolerant to any lactic acid bacteria now (any dairy triggers a further worsening of my illness), but these are the probiotics that triggered my predicament:
    http://www.iherb.com/Now-Foods-Gr8-Dophilus-60-Vcaps/635

    I have a hunch that the Lactobacillus salivarius might have been the main culprit or at least had something to do with it.

    Ingredients:
    Lactobacillus acidophilus 1.2 billion *
    Lactobacillus casei 600 million *
    Lactobacillus rhamnosus 600 million *
    Lactobacillus salivarius 600 million *
    Streptococcus thermophilus 400 million *
    Bifidobacterium bifidum 200 million *
    Bifidobacterium longum 200 million *
    Bifidobacterium lactis 200 million *
     
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  17. Sidereal

    Sidereal Senior Member

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    I've been everywhere along the mild-moderate-severe spectrum. I've picked up and lost dozens of symptoms along the way. The symptom complex I have today is totally different to what I had 20 or 10 or even 5 years ago. It's still the same disease. For me the only commonalities between "then" and "now" are rapid muscle fatiguability/weakness and abnormal delayed reaction to exertion. I can induce different symptoms in myself simply by taking different prebiotic substrates which expand different microbial populations in the gut.

    I'm not a believer in the heterogeneity argument or that there are a ton of different diseases under the ME umbrella. Bad case definitions like Oxford or Fukuda yield heterogeneous samples in the sense that they include non-ME patients, sure, but I don't think Ramsay ME has meaningful subsets, I think it's all the one disease with lots of possible symptoms/manifestations in addition to the core symptoms.

    I think if you take the time to study what lots of patients with ME are describing and get to know this disease well a certain gestalt emerges and you can diagnose this without pointless referrals and overinvestigation. In reality our "fatigue" does not at all resemble stuff like hypothyroidism or anaemia or cancer or depression. Severe ME really shits all over the "fatiguing illness" argument.
     
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  18. Sidereal

    Sidereal Senior Member

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    This just goes to show you how unpredictable our responses to treatments are. My mother with mild ME takes this very product you linked to with great success for her IBS-D which has plagued her for decades. I, on the other hand, develop hellacious symptoms of the sort you describe from just one capsule of lactobacillus probiotics, especially acidophilus. Burning total body pain in muscles, joints, tendons, nerves etc. I'm lucky in that the symptoms last only 2-3 days, after that I'm back to baseline.

    Really sorry to hear about your predicament. Horrific reactions to LAB and many other things have been discussed over and over again on the big resistant starch thread but unfortunately many people do not know how risky probiotics and prebiotics can be in ME.
     
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  19. Bob

    Bob

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    Before my adverse reaction to this product, any product that contained streptococcus thermophilus used to resolve my occasional bouts of mild and transient irritable bowel.
     
    Last edited: Oct 3, 2015
  20. Bob

    Bob

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    I wish I'd known. I managed to miss all of those discussions.
     

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