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A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 15, 2013.

  1. Erik Johnson

    Erik Johnson Senior Member

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    It looks like people have never read Osler's Web by Hillary Johnson and they don't understand what happened with CFS.

    The CDC and Stephen Straus of the NIH were embarrassed and humiliated by what they thought to be a couple of hick doctors at a ski resort who overturned their "CEBV Syndrome" hypothesis. The CDC was forced to grudgingly concede to the new evidence-base and make a gesture of "scientific response".
    But to cover up their incompetence and malfeasance, the new syndrome was deliberately made to be vague (not totally wrong, but hopelessly ambiguous) and throw in one line about "To maximize chances of identifying persons with a possibly unique medical entity" JUST IN CASE there was one. The frosting on the cake was the deliberately trivializing name.

    The CFS definition itself tells you not to think of the description as being the disease.

    So... if you read the fine print and follow the instructions, there is really nothing all that wrong with the definition.
    It never said the illness was fatigue, nor did it claim that the "unique medical entity" was NOT "ME".

    The CDC just stood back and let the confusion roll, acting like "Who, us? WE never said it wasn't serious or real"
  2. wdb

    wdb Admin

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    ME is largely defined by a set of symptoms e.g. International Consensus Criteria so I don't see any reason to exclude the possibility it may be more than one disease (probably a significantly smaller number though than CFS or CF).

    Even if you want to take ME literally as inflammation of the brain and spinal cord then a) that would only account for a sub-set of those diagnosed with ME and b) would still not exclude the possibility of more than one underlying cause.
    alex3619, Firestormm and Simon like this.
  3. Erik Johnson

    Erik Johnson Senior Member

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    People can run around in circles all they want, claiming that nothing is known about CFS and that it is all very confusing.
    Which is apparently the primary means of keeping CFS "confusing".

    But that only works up to the point of being confronted by the facts.

    The entire procession of events and the evidence that led to the creation of the syndrome are fully documented.

    We know, and always did, everything that was reported in Osler's Web.
    -------------------------------------------------------------------------------------------
    http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
    A Brief History of Myalgic Encephalomyelitis and an Irreverent
    History of Chronic Fatigue Syndrome
    -Byron Hyde M.D.
    The 1988 CDC definition did several things, all of which caused
    immeasurable confusion.
    Why did the 1988 CDC definition damage our knowledge and
    understanding of the epidemic and endemic disease? Remember that in
    describing the Lake Tahoe epidemic this committee were describing a
    typical Myalgic Encephalomyelitis Epidemic
  4. MEsupport8

    MEsupport8

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    THANK YOU! This is so obvious, it has been a source of great frustration that so many years have been wasted lumping millions of people together based on one symptom - fatigue. There are adrenal people, GI/yeast people, immune/NK function people, HHV6 and other Herpes people, thyroid people, etc. etc. etc. I (and I'm sure many other patients) am more than happy to continue to pool our resources and maintain a united front until they can definitively identify and solve separate illnesses and tease them out of the large group of uncared for patients, and certainly to house all under an umbrella of related pathways where they exist thereafter, but no research can ever produce any useful results if we continue to vaguely define the patients in each study and then wonder why their symptoms, and the treatments they respond to, are so inconsistent with each other.

    I have severe genetic immune-pathway ME, which bears little resemblance to the many patients I encounter who have adrenal or thyroid issues, aside from the fact that many of us struggle to work and are on disability. We are all sick, but no wonder my doctors fail to treat me, when I am bedridden with a completely failed immune system and failed body and they are using people who have a completely different illness for their research! "CFS" is the name for "multiple different diseases lumped together because we don't care enough about any of these patients to learn what they actually have or how they are different - they are all tired, let's just throw them away" - can somebody PLEASE get that stupid name out of our "medical" institution in the US, so patients can finally be treated like people with doctors who actually care what has gone wrong in their individual bodies!! I am sick of being a throwaway person in my own society, and in my medical community, when I have so much evidence to give if only somebody wanted to study me as part of a subset, not constantly throw all my test results into a pool of hundreds of unrelated results for yet another study that wastes research dollars and precious time. Have a brain, we are not all the same, we are not just to be thrown away on the pile of the "fatigued" for us all to rot together in meaninglessness. Ask the patients for once, we could tell you in moments what it seems to be taking doctors decades to think of on their own!

    [Argh! - rant... Just have to get it out sometimes...]
    camas, GracieJ and rosie26 like this.
  5. Legendrew

    Legendrew Content team

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    Good article - interesting content and nice to see someone putting a lot of hard work into ME research. Hopefully in 5 years time we could have an answer as to what causes all the suffering and might even have a treatment to stop it!
    rosie26 likes this.
  6. Erik Johnson

    Erik Johnson Senior Member

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    My confidence that this is "good research" is seriously tempered by my wonderment that they simply won't just come and ASK.

    They might be surprised at what we have always known.
  7. Nielk

    Nielk

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    What do you mean by "us"?
  8. Simon

    Simon

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    Looking for evidence without preconceptions

    This is in reply to a number of posts, particularly those by Erik Johnson:
    I don't think it's about rights - a broad range of illness is already being categorised as ME/CFS. The real question is how to get clarity, and understand what's really going on. And I believe what's being proposed with the 5,000 cohort study will do that.

    Let's say there is a true ME, as defined by Ramsey: that should still show up as a unique cluster with a distinct biological/clincial signature. Unless of course it was a unique illness that only applied to those in the original outbreak, or also including those since who were part of a later infectious outbreak with identical symptoms. If that's the case, it might not show up in this study, but if it only covers a tiny number of people, we still need to work out what's wrong with everyone else.

    So here is how the clustering is supposed to work: Take 5,000 patients and profile them every way you can: clinical data, symptoms, onset type, comorbidities, biological data eg gene expression, proteomics, NK types, genotypes and so on. The idea is that real, distinct diseases will form clusters, or rather patients with the same disease will cluster together, and away from patients with different underlying disorders:

    cluster1.png
    For this approach to work, you need to include the right factors eg NK status or genotype. Since we don't know what the right factors are, the approach is to throw the net wide and get data on everything conceivable: computing technology and fancy statistical approaches will still find the clusters even if there is a huge amount of noise (non-relevant factors) in the data. [edit: assuming that the data does include they key factors].

    One possible outcome is that there will be a single cluster that exactly matches ME as defined by Ramsey. Or as defined by ICC. This would be validation of those criteria. And the rest could be an indistinct mess. More likely, there will be several clusters that don't exactly match existing case definitions, and some indistinct mess too. As Stephen Holgate said during the Forward ME meeting, current definitions are arrived at by groups sitting around tables: the best we have right now, but need validation with biological data.


    Yes. And hopefully they will divide what's left into other causes that, with further study, will become known. And treatable.
    MeSci, xchocoholic, rosie26 and 6 others like this.
  9. Erik Johnson

    Erik Johnson Senior Member

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    I'm sure all these "alternate CFS's" are very interesting, but I wasn't present for them.
    I speak for the original CFS.

    -----------------------------------------------------

    http://www.talkhealthpartnership.com/forum/viewtopic.php?f=493&t=4566&p=13661#p13661


    Re: Is ME infectious?
    Postby Erik Johnson on Fri Aug 16, 2013 3:14 pm

    I'm a survivor of the 1985 Lake Tahoe epidemic, a graduate of Truckee High School, and a Holmes et al "CFS definition patient-study group" participant as a prototype for the new syndrome of "CFS"

    We have had a few more minor outbreaks since then, but nothing like the huge "Mystery Illness" incident that sickened thousands of people.

    This strange illness is full of bizarre contradictions.
    At times spreading like wildfire through groups of closely associated people, yet with people from these very groups seemingly unable to transmit it to anyone else.

    I saw a pattern immediately. A strange "exception to the rules" in which the flu-like illness turned from noninfectious to wildly contagious.

    The contagion occurred when people in the early "shedding phase" of viral illness were all in the presence of moldy buildings, particularly ones with Stachybotrys Chartarum.
    Only then, was the disease easily passed from one to another.

    The Truckee "teachers lounge" incident that caused Dr Peterson to call the CDC, starting the path to the new syndrome, is a very well described example of this process.

    I contacted the teachers at Elk Grove, and they found the very same "toxic mold" that we in Truckee did.

    The clues are right there. Simply ask yourself, "If this were a purely viral illness, then why did the one teacher who made the effort to get out of that lounge manage to avoid becoming ill?"

    -Erik Johnson

    http://www.ncbi.nlm.nih.gov/pubmed/8148452
    Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
    Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
    Chester AC, Levine PH.
    Georgetown University Medical Center, Washington, D.C.
    Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
    PMID: 8148452 [PubMed - indexed for MEDLINE]
    Lou likes this.
  10. Erik Johnson

    Erik Johnson Senior Member

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    That's right. "Thousands"

    The few hundreds that made it to Cheney and Peterson's office were only the tip of the iceberg.
  11. Waverunner

    Waverunner Senior Member

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    Great news. This could be a major move into the right direction!

    Here's what I said on August 7th.

    "There are a few reasons why things are so messed up with CFS but the biggest problem in my eyes is the lack of diagnostics. There are thousands of possibilities where things can go wrong in the human body. From infections, to autoimmune disease, to genetic defects, to toxins, to the microbiome etc.. Now the medical problem is, that we are not willing and/or not able to test for these things.

    So if we look at a patient population of CFS it likely is highly heterogeneous. And even if we look at two patients who suffer from the same infection, they both have a different genetic makeup which can influence the outcome or the treatment success tremendously. In conclusion we can say, that we don't know the reason for CFS in each patient. In the worst case, 10 PWCs suffer from 10 different diseases but all are labeled CFS. This is a gigantic problem because as long as you are not able to differentiate between these patients, you won't be able to conduct reliable studies. What would be the results if you study a patient group that consists of one person with diabetes, one with cancer, one with HIV and one with IBD and try to find a common cause or a working treatment? The study would be a complete mess because the cancer patient doesn't need insulin and the IBD patient doesn't need chemotherapy.

    A better way would be to take 1,000 CFS patients and run all kinds of tests of them. After you did this, you cluster the patients into groups, according to similar diagnostic markers (e.g. one group that seems to have an active herpes virus infection). Then you start specific treatments for each cluster and see if it works.

    What we do at the moment is, we conduct research studies on 10 to 30 patients with CFS. We find all kinds of abnormalities but we have no cause. We then conclude that more research is needed and that's it. This explains why we still have not one single treatment and not one single reliable test for CFS, although this illness exists for countless decades now. As long as this doesn't change, it will be the same for the next decades as well."
    camas, MeSci, xchocoholic and 3 others like this.
  12. Erik Johnson

    Erik Johnson Senior Member

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    Very strange to see all these calls for research, when they won't even research the evidence that started the syndrome.

    Not even ask a few questions.

    And it would be so easy, too.
    I used to think it was because it didn't occur to them, but after offering to talk and being turned down, it looks pretty clear that resolving the original CFS incident is not exactly what they have in mind.
  13. Bob

    Bob

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    Erik, I don't know if you are aware, but the proposed research, discussed in the article, would be UK-based, and Stephen Holgate is a UK scientist. And UK patients want investigations into the illness/es that UK patients have. The proposed research doesn't stop anyone from investigating Dan Peterson's patients.
  14. Erik Johnson

    Erik Johnson Senior Member

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    Any researcher, anywhere in the world that uses the term "Chronic Fatigue Syndrome" is making a reference to something very specific, about which I have the authority to speak.

    Science doesn't have territorial boundaries.
  15. Erik Johnson

    Erik Johnson Senior Member

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    Prof. Holgate does not have computer access that crosses the water?
    He has no means to make contact with the original source of CFS?

    Professor Wessely was in contact with Stephen Straus, and congratulated him on his handling of the situation.
    Clearly, the British psychs had no problem knowing about our phenomenon, and omitting the exclusion for psychiatric disease.
    --------------------------------------------------------------------
    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389


    Other clinical conditions that may produce similar symptoms must be excluded by thorough evaluation, based on history, physical examination, and appropriate laboratory findings. These conditions include

    chronic psychiatric disease, either newly diagnosed or by history (such as endogenous depression; hysterical personality disorder; anxiety neurosis; schizophrenia; or chronic use of major tranquilizers, lithium, or antidepressive medications); .
  16. Erik Johnson

    Erik Johnson Senior Member

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    I see the message was amended to include that nothing is stopping anyone from investigating Dr Peterson's patients.

    So true, and they must! If their intent is to resolve the outbreak which caused Dr Peterson to call the CDC for help.
    Which was the point and purpose of creating the new syndrome.
  17. Ecoclimber

    Ecoclimber Senior Member

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    I woud be interested on your take, Eric, of people who become ill from "Valley Fever" Coccidioidomycosis, is caused when people inhale the spores of the Coccidioides fungi.

    Do you believe that Valley Fever has relationship to your illness?

    http://news.yahoo.com/flu-valley-fever-increases-arizona-california-160350415.html
    alex3619 likes this.
  18. Erik Johnson

    Erik Johnson Senior Member

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    Nope. This stuff was amazing. You had to see it!
  19. Guido den Broeder

    Guido den Broeder *****

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    This.
  20. Simon

    Simon

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    Not sure if I have understood right, but i think you are asking:
    1. Are any clusters actually likely to relate to underlying Diseases?
    2. What does it mean for patients if new diseases are found within ME/CFS?
    If not what you want, please shout.

    1. Clusters vs Diseases/Symptoms
    Fair questions. Check out my earlier attempt to explain clustering, where the key point is finding the critical factors that do relate to underlying disease status. Most factors, including aches and pains, will be secondary to the disease and so much 'noise' when it comes to finding causal pathways. Of course, we don't know which those distintive factors are (which individually or collectively would be biomarkers for the specifc disease), hence the plan to capture as many different factors as possible: genes, gene expression, proteins, clinical symptoms etc. IF the 'real' factors are within the mass, plenty of computing power and robust statistical techniques (there are a lot developed and developing for just this kind of big data problem) should find meaningful clusters relating to underlying disease.That is the theory of the approach anyway.
    - edit: and having found clusters, the key step is then replication on a fresh sample...

    And while it may be difficult to nail exactly how a disease causes a symptom, if you can find a disease, there's a good chance most of the symptoms are down to it: aches and pains are common to many types of infection - probably down to cytokines or other immune responses. If you can fix the disease and the symptoms vanish, that's what really matters.

    2.What does it mean for patients if new diseases are found within ME/CFS?
    It's good to consider the implications.

    For me, though, the overriding concern is to understand the true nature of the illness(es) as the best way to find really effective treatments. Follow the science, really, but in terms of any fall-out, I think it will be very slow so we will have time to adapt:

    Plenty of time to get used to any findings
    Putting together the cohort of 5,000 will probably take a few years, (assuming it does secure funding); then probably at least another 2 years before the results of any research on the cohort is available. That will hopefully reveal clusters and give clues at to molecular pathways.

    Then at least another few years to nail down the first pathways (assuming they exist). And at least 5 years to find a drug and get it to market. So well over a decade in total, and that's just to tackle some of the disease clusters. We won't be waking up any day soon to discover that we all have one of several new, previously undisovered diseases within ME/CFS - or are orphaned in an undiagnosed mishmash of leftovers.:)
    rosie26 likes this.

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