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What are the tests that do currently exist?

Discussion in 'General and other signs and symptoms' started by josepdelafuente, Oct 26, 2022.

  1. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

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    I've seen a bit of back & forth on here, Twitter etc about whether there are any tests to help in ME diagnosis. Obviously general NHS line here seems to be that there aren't, but I think I've seen people say there are some.

    The only name I can remember is CPET.

    So, what thoughts do people have about if there are any, what they are, and why they can help diagnosis / what they indicate?
     
  2. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    There isn't anything the NHS accepts or will do. There are plenty of potential biomarkers for this group of conditions in the blood and physical tests from research but nothing has gone through the accepted trial process yet. At some point one of the various tests needs to be trialed appropriately to be used as a diagnosis tool, there are a bunch to choose from over the last decades. Usually they aren't done by the reseachers but by healthcare systems so while the NHS is stuck on BPS and Psychology I doubt we get the necessary progressing trial.

    Even CPET isn't really accepted in the NHS for anything but research and doing them is a very bad idea since its maximal exercise done across two days.
     
  3. Trish

    Trish Moderator Staff Member

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    I agree there are no definitive tests. So diagnosis is by case history to see whether the symptoms fit with the core symptoms of ME/CFS according to any one of the accepted definitions. In the UK this would be the NICE definition. And importantly, doing other tests to exclude conditions that have some overlapping symptoms.

    So far, apart from the 2 day CPET findings, the only differences found in research studies have been more a case of group differences with some overlaps between pwME and healthy controls. That means that while the research results are indicators of directions for future research, they aren't any use for identifying individuals with ME/CFS.

    Those research tests that do claim a clear distinction between pwME and healthy controls have been on very small samples of patients and need to be replicated in much larger samples, and also compared with results from people with other diseases, not just with healthy people to find out whether the results are specific to ME/CFS.
     
  4. livinglighter

    livinglighter Senior Member (Voting Rights)

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    I’ve come across several accounts of people using neuropsychological evaluations to help in the ME diagnosis.
     
    DokaGirl, RedFox, Louie41 and 2 others like this.
  5. Mij

    Mij Senior Member (Voting Rights)

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    I think testing to r/o other diseases/illnesses has to be number one to start and then go from there with a proper history et
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Excluding other things is certainly the one thing that is of known value.
    The problem with potential biomarkers is not about trials. It is simply that the evidence that any of these really are biomarkers is not reliable enough to be convincing. Nothing to do with the NHS or healthcare systems. The evidence just isn't there. In most cases we have enough failed replication attempts to be pretty sure they are not biomarkers after all.
     
  7. RedFox

    RedFox Senior Member (Voting Rights)

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    As I understand it, developing a biomarker is much harder than finding some chemical whose levels are different in healthy vs pwME. To publish a paper, you just need to show there's a statistically significant difference between healthy people and pwME. To develop a biomarker, you have to prove the difference needs is big enough that levels in the two groups overlap little and that most other disease don't give a false positive. Then you have to reproduce the results thoroughly.
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Location:
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    Not necessarily. A lot of biomarkers have much more fluid relations to specific illnesses - ESR, rheumatoid factor, calcium level, etc. The simple problem for ME is that we have not got to the first stage yet - showing reliably that there is even a statistical association.
     
    FMMM1, Lilas, livinglighter and 8 others like this.
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Aside from the question of a definitive biomarker, or biomarkers, there are suggested tests that may indicate abnormalities, but these are not of course recognized biomarkers of ME.

    As others have said, there isn't a recognized biomarker for ME. Also as others here have said, exclusion of other diseases is important.

    In my experience, after exclusion of all else, what was left for me was "cfs", or "Chronic Fatugue Syndrome", much later confirmed by an expert, who at that time used the term ME/CFS.

    The ME expert looked at my tests that mirrored some results that other pwME had, noted my symptoms, did some more tests, and confirmed my diagnosis.

    If a person's aim is to indicate there is some form of dysfunction or some level of disability, this might be a lower bar to meet.

    Research has found abnormalities in some pwME. I would suggest the Canadian Consensus Criteria (CCC) for ME/CFS, and it's Overview. Page 18 of the Overview lists the tests ME experts have found to be abnormal in some pwME. The CCC was written by 11 ME experts who had seen 20,000 pwME by time of publication on 2003. The Overview came out in 2005, if I'm not mistaken.

    This info can be found on the website for the ME/FM Action Network. I will add the link to these a bit later. MEpedia probably also has these documents.

    As well, the 2015 Institute of Medicine report on ME/CFS has info on tests. I think MEpedia also has this document.
     
  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @josepdelafuente

    Here are the links to the documents I noted above:

    https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

    https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

    https://me-pedia.org/wiki/Institute_of_Medicine_report

    ETA: It's difficult to get many if not most of these tests covered by mainstream health care. One's physician might go along with a supine/versus standing heart rate and pulse measures in office, as described on page 18 of the CCC Overview. Given certain circumstances, there might be other tests in the Overview and the IOM report that might be covered by government health care. It unfortunately, is a mixed bag.
     
    Last edited: Oct 27, 2022
  11. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Hi @livinglighter and @josepdelafuente

    I found this link to the Massachusetts ME/CFS & FM Association re neuropsychological testing:

    https://www.massmecfs.org/resource-...iewsneuropsychological-testing-for-cfs-and-fm

    ETA: It's indescribable how really terrible pwME have been treated. Over 30 years ago, neuropsychological test findings indicated deficits in brain functioning for pwME. And yet, ME has been publicized as a psychosomatic condition/hysteria/wrongful beliefs etc.
     
    Last edited: Nov 2, 2022

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