Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Does it look like CFS to you guys

Discussion in 'General Symptoms' started by Justin_Sohan, May 2, 2016.

  1. Justin_Sohan

    Justin_Sohan

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  2. Effi

    Effi Senior Member

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    hey @Justin_Sohan ME/CFS and HIV have a few things in common. Some doctors back in the day used to call ME 'non-HIV AIDS'. Any info about the virus you are talking about seems pretty old, so I'm thinking that if there really was such a virus being that contagious, we would've heard more about it? Think about the avian flu, swine flu - so many precautions were taken, so much information was going around re: prevention...

    Here's a PR-thread about it:
    http://forums.phoenixrising.me/index.php?threads/can-be-cfs-caused-by-a-hiv-like-infection.40928/
     
  3. Amaya2014

    Amaya2014 Senior Member

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    @Justin_Sohan Pretty scary stuff. Although there is some definite overlap I don't think these issues are consistent with ME/CFS.

    1. This new "HIV-like" pathogen is characterized by its ability to cause a significant overall deterioration in health in a subset of individuals who catch it. In particular, this pathogen can induce a sudden onset of powerful mental state changes, including extreme anxiety disorder, anhedonia, and suicidal ideation. These mental state changes are chronic, and persist for years.

    2.
    Tongue
    • White tongue coating, often with red spots on the tongue (see images of symptoms).

    3.
    Skin
    • Systemic red rash (purpura rash) • Peeling skin particularly on palms of hands and soles of feet • Skin on face becomes oily • Skin becomes stiff and loses its elasticity, such that indentations made by finger pressure take a long time (about 5 seconds) to disappear • Subcutaneous nodules (nodular subepidermal fibrosis) may appear • Slow wound healing.

    4.
    Joints
    • Joints make cracking or popping sounds when moved (crepitus is the medical term for this sound) • Overall pain and soreness of joints (arthralgias) • Joints may become deformed.

    5.
    Blood Tests
    This "HIV-like" pathogen can cause a decrease of white blood cells. Around 40% of the infected patients with symptoms have low CD4 cells, as low as 200 CD4 cells per mm3 of blood, and raised CD8 counts. Though 60% of infected patients with symptoms have normal CD4 levels. CD3 cells in some patients are slightly lower than the reference value. Natural killer cells are normal.
     
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  4. Justin_Sohan

    Justin_Sohan

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    Hey @Amaya2014 , I have looked through the forum and found out almost all the symptoms, which you don't believe are consistent with ME/CFS , are discussed by other patients more or less. Maybe some of them are not so typical. Frankly speaking, I am just afraid of the fact that I might have anoter disease after a long time trying to accept the fact that I get CFS. I really feel some relief sharing with you guys in PR. And I don't want to go out of this great family.
     
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  5. Justin_Sohan

    Justin_Sohan

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    Hey @Effi , Thank you for being so helpful everytime I have a question. In the past a few days I had some conversation with some Chinese patients of this HIV-like disease, they have beening living with this disease for so long, and they tried to look for help from the government. But the local government, for some unknown reason, suppresses the news for the past 5 years. They express that everyday activities like kissing or using the cup of a patient can be a way of transmission. The number of the patient is increasing dramatically every day, yet those patients we have already known is just a tip of iceberg. Thousands of people may still even do not know why their bodies are malfunctioning. A more appalling fact is that, as the current methods cannot find the cause of the disease from blood test, some desperate patients donate their blood just to make more people infected so that it would be more likely that the world would know about the disease.

    I would believe these theory if I haven't have these symptoms. It really freaks me out.
     
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  6. Amaya2014

    Amaya2014 Senior Member

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    @Justin_Sohan I highly respect your position. There is no need to go anywhere as the wealth of information here is incredible and people who can relate to suffering are priceless.

    I agree the jury is still out on what ME/CFS is in totality. I'm in no way trying to be judge here...personally I'd love to give back my ticket to this ship:rofl: (but it is what it is).

    Certainly, homogeneity is variable. I don't have those symptoms but am always open for education. My concern is that ME/CFS doesn't have an accepted treatment yet, so if someone has something other, I wouldn't want them to be stuck in this box for years and miss out on a cure and getting their life back. I wouldn't want that for myself. I'm always in hope that something else will present itself and this nightmare will be over.

    I found this previous thread that might be of some assistance to you. Keeping you in prayer:angel:
    http://forums.phoenixrising.me/index.php?threads/emergency-report-from-china.742/page-2
     
    Last edited: May 2, 2016
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  7. Effi

    Effi Senior Member

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    This is very interesting. How many people are we talking about? If it is a big enough group it could be interesting to think about some sort of civil science research project to see if you can find some clues (There was one recently on PR but I can't remember what it was right now...)

    FIY, there's a new international online patient platform called MEaction, which makes it easier to connect to people in your region - strength in numbers! The Chinese local platform looks pretty empty still, so they could use your help... ;) https://my.meaction.net/local_chapters/meaction-zhong-guo
     
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  8. Justin_Sohan

    Justin_Sohan

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    @Effi thanks. I most certainly will do my best!
     
    Last edited: May 2, 2016
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  9. Hip

    Hip Senior Member

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    In fact there is a lot of similarly between the Chinese "HIV-like" disease and ME/CFS.

    Looking at the symptoms listed on the New HIV-Like Virus in China website, I have pasted below all the "HIV-like" virus symptoms that are also found in ME/CFS:


    Chinese "HIV-like" Virus Symptoms Also Found in ME/CFS:

    • Incubation period of the "HIV-like" pathogen appears to be around 2 to 3 days. — That is similar to ME/CFS, because the incubation period of the enteroviruses linked to triggering ME/CFS is about the same (coxsackievirus B incubation period is 3 to 5 days; echovirus incubation period is 2 to 7 days).

    • Ongoing fatigue and weakness, with mental and physical fatigue after exertion. — This one is the post-exertional-malaise which is very typical of ME/CFS.

    • Poor sleep.
    • Inability to tolerate alcohol, with one or two drinks causing dizziness and higher inebriation than normal.

    • Chronic upper respiratory tract infections, chronic severe nasal congestion.
    • Swollen lymph nodes (especially in the lower jaw, and groin).
    • Lymph node pain.

    • Vision may deteriorate.
    • Headache, nausea, drowsiness.

    • Generalized anxiety disorder
    • Depression.
    • Poor memory, confusion and cognitive dysfunction (brain fog).

    • Muscle pain.
    • Chronic diarrhea.
    • Stomach ache, abdominal pain.
    • Natural killer cells are normal.

    • Around 40% of the infected patients with symptoms have low CD4 cells, as low as 200 CD4 cells per mm3 of blood, and raised CD8 counts. — This is similar to ME/CFS, since in the first two months of enterovirus-associated ME/CFS, Dr John Chia found that some patients have significantly decreased numbers of CD3 and CD4 cells. Ref: 1

    So all the above Chinese "HIV-like" virus symptoms are also found in ME/CFS.
     
    Last edited: May 3, 2016
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  10. Valentijn

    Valentijn Senior Member

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    Most of those aren't ME symptoms, @Hip.
     
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  11. Hip

    Hip Senior Member

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    Most? Can you name any one that is not listed in the CCC or ICC? As far as I can see, those are all standard symptoms found in ME/CFS.
     
    Last edited: May 3, 2016
  12. Amaya2014

    Amaya2014 Senior Member

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    @Hip @Valentijn this is my question. I'm looking at the clinical criteria as the basis of closing in on a diagnosis. Then, I look at the various other manifestations that come in to play due to comorbidities, genetics, lifestyle, etc, If the main criteria isn't met, do we miss the forest for looking at trees?
    CLINICAL WORKING CASE DEFINITION OF ME/CFS

    A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine, and immune manifestations; and adhere to item 7.

    __ 1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

    __ 2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer.

    __ 3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

    __ 4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles, and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.

    __ 5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive, sensory – e.g. photophobia and hypersensitivity to noise - and/or emotional overload, which may lead to “crash”2 periods and/or anxiety.

    [​IMG]
    __ 6. At Least One Symptom from Two of the Following Categories:
    __ a. Autonomic Manifestations: orthostatic intolerance - neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional

    dyspnea.__ b. Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body

    temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change - anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.

    __ c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu- like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

    [​IMG] [​IMG]
    __ 7. The illness persists for at least six months: It usually has a distinct onset, **although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.

    Also, there may be some secondary and event-related anxiety due to the overwhelming symptoms but this tends to abate and does not fit a clinical diagnosis of GAD.

    I also, was under the impression that although not 100% consistent, NK cell function was most often low. Nowhere in the CCC does it say NK cell function is normal as a factual consistent finding for persons with ME/CFS.

    Neither is there mention of visual deterioration.
    [Other symptoms: Visual accommodation and focusing difficulties, blurred or double vision and dry eyes are common. Tinnitus may occur. ] Or, chronic upper respiratory tract infections and nasal congestion. I was under the impression a person feels flu-like but there was very little objective medical evidence. If I had obvious infections, I think docs would be thrilled to drown me in antibiotics.

    Just my thoughts.
     
  13. Hip

    Hip Senior Member

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    @Amaya2014, if you are quoting blocks of text, it is best to put it in a quote box, to distinguish it from your own words, otherwise it looks confusing. (To do this, select the text and press the quote button, which is just left of the floppy disk button).


    NK cell function can be low in ME/CFS, but NK cell count is normal. In the above, it refers to NK cell count.



    Where does the above text come from, or did you write it?



    Bear in mind that the symptoms of the "HIV-like" virus were not derived from any studies (the Chinese government has proclaimed that the "HIV-like" virus is "all in the mind", a psychological condition, so there are very few biochemical studies on this disease, especially because academics in China are taking risks when they speak out against government views).

    Thus there are no official lists of symptoms of the Chinese "HIV-like" virus; the symptoms are just those the patients's themselves have reported on blogs, forums or in the media.

    So when a patient says "deterioration in vision", you can take that description a bit loosely, because they are not medical experts. The chronically blurred vision or inability to focus vision that can occur in ME/CFS could be loosely classed as "deterioration in vision".



    A chronic or recurrent sore throat is a standard ME/CFS symptom. Sinusitis or nasal inflammation or congestion are often reported on this forum.
     
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  14. Amaya2014

    Amaya2014 Senior Member

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    Thank you for the info @Hip.

    I see about the function and count. The website you reference doesn't have any info on NK cell function.

    Yes, those are my words on anxiety. Where did you get your info about GAD in ME/CFS?

    I don't think it can be said the visual issues correlate with deterioration but in the loosest of terms. The website should either list what people are reporting or call it visual disturbance, in my opinion.

    Still, my main question is instead of looking at outliers, shouldn't a patient who thinks ME/CFS is their issue first see if they qualify for the basic clinical criteria?
     
  15. justy

    justy Donate Advocate Demonstrate

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    I have all of these except the big D.
     
  16. Amaya2014

    Amaya2014 Senior Member

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    ME/CFS needs to replace lupus as the great imitator! I'm trying to get some understanding here. @justy, are those symptoms you attribute to ME/CFS or do you have a couple of co-morbid conditions? Also, do you think your illness is represented well with this symptom list: https://sites.google.com/site/newhivaidslikeviruschina/
     
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    This looks like classic mass hysteria to me. It has been around since at least 2010 and as far as I know so far there are no publications on it in English (the site gives citations that are in Chinese it seems). The symptoms look like a random range of things people will worry about. Nothing makes any immunological or microbiological sense to me so far.

    If it was as infectious as suggested there would be thousands of people who have flown to the UK and US presenting in A and E with purpura or whatever. Some resident would have written it up.

    I am always ready to change my mind but this looks like empty scaremongering, not ME/CFS.
     
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  18. Hip

    Hip Senior Member

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    The small amount of biomedical research that was done in China showed that the virus was not any mutated form of HIV. It was the patients and media who dubbed it "HIV-like". It is also referred to as "negative AIDS", "negative HIV" and the "unknown virus".

    The patients themselves were very fearful that they may have caught some new airborne version of HIV, and so doctors in China also dubbed the illness as "fear of AIDS disease" or "AIDS phobia disease".

    Some patients in China were so fearful that they had contracted a new airborne HIV, that they would take repeated HIV tests, all coming out negative, but they kept taking the tests, sometime dozens of times. That's why doctors gave it the name "fear of AIDS disease".

    I have had quite a bit of dealing with Chinese patients with this disease through my website.



    That section of the website in question is about white blood cell counts in general, so I would think it is probably safe to assume they are talking about NK cell counts, not NK function. NK cell function tests are expensive, rare and difficult to perform, so I doubt that the Chinese studies (which I believe were quite cursory) would bother with NK function tests.



    If you look at the CCC itself, it says:
    Once you are treating anxiety symptoms with benzodiazepines, that's a non-trivial case of anxiety. If you also look at the full CCC document (not just the overview version), it also mentions panic attacks. Panic attacks are classed as panic disorder, whereas ordinary anxiety without panic attacks is generalized anxiety.

    If you look at this study, you see that generalized anxiety disorder was found in around 13% of ME/CFS patients, and panic disorder in 7%.



    I suspect half the problem may be in figuring out what people are really saying, given (a) the amateur nature of patients' description of their own symptoms (they are not medical experts); (b) the translation issues between Chinese and English.



    In the case of an individual patient such as @Justin_Sohan, yes, it is a good idea to look at the symptoms listed in the CCC or the CDC definition of ME/CFS, and see if they qualify for an ME/CFS diagnosis.

    However, if you look at the CDC definition, for example, it is pretty clear that those with the Chinese "HIV-like" disease are going easily qualify for an ME/CFS diagnosis. The CDC definition even includes chest pain, which is a common symptom of the "HIV-like" virus.

    That is not to say that the Chinese "HIV-like" disease is ME/CFS; that's another question. But it certainly is very ME/CFS-like. And in practical terms, that suggests that treatments which are beneficial for ME/CFS may also be beneficial for the Chinese "HIV-like" illness.



    My own hunch is that the Chinese "HIV-like" disease might be caused by an unusual strain of one of the regular ME/CFS-triggering viruses, such as coxsackievirus B. Because it is an unusual strain, it causes a number of unusual symptoms in addition to the regular ME/CFS symptoms. But that of course is just a guess.
     
    Last edited: May 3, 2016
  19. Hip

    Hip Senior Member

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    There are a couple of studies whose abstracts are in English, and these are found at the top of this page of the website.
     
  20. Hip

    Hip Senior Member

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    That is puzzling, but then it is equally puzzling why you tend not to get outbreaks of enterovirus 71 in the West; these outbreaks, which kill lots of children, seem mostly confined to Asia.
     
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