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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. Firestormm

    Firestormm Guest

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  2. Sasha

    Sasha Fine, thank you

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    It would be nice to do some joiny-uppy stuff and have any patients entering clinical trials (such as the Rituximab trial) also get included in this database.
    Firestormm likes this.
  3. Firestormm

    Firestormm Guest

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    I agree. And like the phrase 'joiny-uppy' too :) Am wondering if there has been anything with which we might compare. Some other disease that was looked at in this way, in the recent past on such a large scale? What say you Simon my man? :)
    Sasha likes this.
  4. Erik Johnson

    Erik Johnson Senior Member

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    As I examined the history of antecedent epidemics, an interesting thing stood out.
    Aside from the doctor or doctors who identified their own outbreak, the incident is never followed up.
    Even if others use the name, researchers want to study "In their own backyard"

    The name, the entity, the outbreak, and all the evidence gets lost as it shifts from one to the next.
    Over and over. It's like throwing all the game pieces off the board, starting back at square one.

    Oblivious to what they threw away, when they "moved on".

    Some of what they threw away was worth knowing, but since they didn't know how much they had lost,
    they called it "progress" anyway.

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

    "I'll tell you what I was most angry at. A group of scientists that came in this community. Did a study, and did not come back and tell us what had happened"
    -Gussie Baker 1955 Punta Gorda Outbreak

  5. Simon

    Simon

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    It's an important point about how information gleaned from clinical trials integrate into big research cohorts like this. I don't know how practical it is to combine them directly: over on the Rituximab thread, Jonathan Edwards commented on the possibility of combining the proposed UCL study with the Norwegian one and said that while it makes good theoretical sense, the more complicated any study becomes, the harder it is to get high quality data. He said in practice it works better to do such things separately.

    However, if the UCL study finishes before the cohort recruitment is complete, maybe there is a chance to enroll then UCL patients into the cohort. Could be worth suggesting to UCL, once the study is settled?

    Alternatively, the 5k cohort study could be used to explore and build on any UCL findings. Let's say they discover that certain patients respond well to rituximab, and others don't, and they have identified the key factor, eg NK cytotoxicity levels. They could then test for that in the Cohort, to see what proportion of patients generally are likely to respond well to ritux.

    Er, good question. Though in his talk, Stephen Holgate, emphasised how now was the time to study ME/CFS because of the emergence of new techniques, so I don't know if such an in-depth study has been done before, since this is the cutting edge. Maybe that's part of the appeal. Will try to find out if the approach has been used before.
    MeSci and Firestormm like this.
  6. Sasha

    Sasha Fine, thank you

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    I agree that trying to add on to a pre-existing trial would have the downside of complicating matters but enrolling patients in what are essentially two separate studies (the trial and this cohort) wouldn't add complexity to either, just more scope for additional analysis. I think it would make sense to include the trial participants in the cohort before they get treated, as a further opportunity to distinguish responders from non-responders, and to have them in a study where they'll be getting longitudinal follow-up (I think) at no extra cost to the Rituximab trial.
    MeSci likes this.
  7. Simon

    Simon

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    It's hard to know how feasible this is, not least because right now, neither study is funded (or even applied for in the case or Rtx) so we don't yet know the mechanics. My guess is that, because the 5k cohort is so big, it's tapping into clinics in a big way - which presumably means the BACME clinic network. If so, they will be gathering data from their own regular patients, probably new patients so the time spent on diagnosis etc is time already budgeted for. That means they wouldn't automaticlly welcome having to add a separate group to their study, esp if it meant taking clinician time away from regular clinic work.

    Thinking aloud here, one possibility is, if UCL contacts whoever plans the cohort (it's not Stephen Holgate's study AFAIK), they could arrange to recruit for that study via clinics particpating in the cohort (they have to find the patients somewhere, and there are BACME clinics in London). That would minimise any duplication of effort in having patients in both studies. There may be many practical reasons why this wouldn't work, but might be worth discussing the possibility with JE on the Rituximab thread.

    I agree that it would be good if the same patients figured in both studies. And potentially, if a mechanism to cooperate easily can be found, it could apply to other UK studies too, eg Julia Newton's work - which is what you were originally suggesting, I think. So that would be another reason to explore this now.
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  8. Erik Johnson

    Erik Johnson Senior Member

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    No interest in this unusual incident = No interest in the incident that started CFS.





    "This seemed to be evolving, before our eyes, from a flu-like illness into something else"
    -Dr Paul Cheney

    "... and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team."
    -Dr Nancy Snyderman

    "That's when we wondered, Hey, maybe we better call somebody. This is really unusual."
    -Dr Paul Cheney
  9. Nielk

    Nielk

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    Hi Rick,

    Thank you for this. It is Important to inform people of what really happened. I just finished reading "Osler's Web" for the second time and I'm very interested to hear more a out it.
    I feel though that this is important enough to have its own separate thread.
    MeSci likes this.
  10. Erik Johnson

    Erik Johnson Senior Member

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    If Professor Holgate were serious, reading Osler's Web would be a good start.
    Then he would know that CFS was not begun as an umbrella term for "anything and everything"
  11. August59

    August59 Daughters High School Graduation

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    I believe that by the conclusion of the CFI:Lipkin study there will be a significantly new set of players in the field of diagnostic criteria due to the strong advancement in technology and testing medium (serum, urine, saliva, tissue and spinal fluid). Diagnostic testing has ran out of room by trying to find everything in serum for sure. There is probably room in urine and saliva, but spinal fluid and tissue samples will have to be a part of a definitive analysis at some point. Unless some new types of analysis are developed which is very possible. Ultrasound, forms of MRI's and very small tissue samples of tissue and spinal fluid.
    Guido den Broeder and heapsreal like this.
  12. Allyson

    Allyson *****

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    Thanks Simon - great article - 15 sounds about right !
    Not read all posts but here in Australia lots are now being re- diagnosed with LYME, POTS/OI and EDS -
    Ehlers-Danlos Syndrome so these are likely among the 15 along with other CTDs it seems

    Lyme had been dismissed here for years

    cheers

    Ally
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  13. Allyson

    Allyson *****

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    And I should add that as EDS makes y ou more prone to other illnesses it may be likely that some have EDS AND Lyme disease - the overlap in symptoms will make it hard to differentiate but may explain why some seem to respond well to Lyme treatment while others do not - they may have underlying POTs or EDS so the symptoms never disappear even if the Lyme is treated


    ALly.
  14. Erik Johnson

    Erik Johnson Senior Member

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    It had been my impression that researchers wanted to know what happened in the local area high schools, a casino, and a girls basketball team, because it was really unusual.

    25 years of utter unresponsiveness and lack of any questions or investigation indicates otherwise.
  15. Simon

    Simon

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    I asked Stephen Holgate who replied:
    So it is being done, though I'm afraid I don't have any more specifics from the Professor. However, a recent Nature paper on Cancer gives an idea of the approach:

    Like the proposed ME/CFS study, it was on a huge scale - looking at 7,000 indiviudal cancer genomes for 30 different types of cancers (ie looking at the specific mutations in each of 7,000 individual's cancer). From this they identified 21 common 'mutational signatures' - a common pattern of DNA mutations eg there is one mutational signature caused by damage from UV radiation. Which is pretty cool.

    But it wasn't a case of one mutational signature being linked to one type of cancer. Each person's cancer carried at least two different mutational signatures (and not every individual with the same type of cancer would have exactly the same mutations).

    What they found was that some mutational signatures cropped up in many different types of cancer. For instance, one mutational signature common in breast cancer was also found in 16 of the 30 types of cancer studied. Wheras some of the mutational signatures were only ever found in one type of cancer.

    So they started off with 30 different types of cancer. But when they looked at the molecular level - specifically at the types of DNA mutations underlying the cancers, they found a very different pattern, with some DNA mutational signatures cropping up in lots of different cancers.

    The scientists think that by better understanding the precise mutations involved they will learn a lot about the causal mechanisms of cancer.

    This cancer study used some pretty-intensive mathematical computational approaches, which is just the sort of approach that Stephen Holgate has advocated to make sense of a lot of data from 5,000 ME/CFS patients.

    Look like ME/CFS is moving to the forefront of science - which is probably where it needs to be if such a complex illness is ever going to be cracked.

    Short video about the Nature Cancer study:
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  16. Firestormm

    Firestormm Guest

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    Simon appreciate it. And do pass my (our) thanks to Prof. Holgate as well :)
    Simon likes this.
  17. Erik Johnson

    Erik Johnson Senior Member

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    And suppose I were to refuse to agree that whatever Professor Holgate is calling CFS is exactly the same as the illness that started CFS?

    Which I see no reason to do, until researchers agree to incorporate all of the actual evidence which led to Dr Peterson and Dr Cheney calling the CDC for help with our little problem.
    ukxmrv likes this.
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hopefully not only drug treatments will be considered. I would expect that some of the clusters would be amenable to other treatments which do not have such long lead times as drugs, and better safety profiles. Also, some existing drugs with known safety profiles may be useful ('repurposing'), which again can be brought into use relatively quickly.
    Simon likes this.
  19. Simon

    Simon

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    Yes, drug repurposing could be a shortcut eg rituxmab, if there are any suitable available. What other treatents did you have in mind?
    MeSci likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I was thinking of things that some of us already find helpful such as dietary changes and supplements. It's a difficult process working out which foods and supplements help which people, and we may never quite find the optimal mix. Subgrouping patients might help us to do this, so that the interventions are more effective, and maybe even bring about remission or that four-letter c-word...(says to self - go on - say it - OK - cure!) :)
    Jon_Tradicionali likes this.

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