Fibromyalgia test

[Lupusrelative]

Just read an article about a blood test to help with fibromyalgia diagnosis. Fingers crossed.

fmtest.com

[desquinn Partner Volunteer FMAUK Trustee]

The charity would actively advise against the test being taken. Recent news article raises significant concerns on to of the fact that the test has not been validated.

[Dizzytwo in reply to desquinn]

Des, am I right in thinking this kind of test is not done here in the UK. It seems to be something mainly advertising in the US.

[desquinn Partner Volunteer FMAUK Trustee in reply to Dizzytwo]

People in the UK have ordered it and had themselves tested. But it is mainly US although the company dose seem to want to expand its market

[desquinn Partner Volunteer FMAUK Trustee in reply to desquinn]

This is the link to the article I was speaking about and to be honest I would not personally take the test before reading this but the article is quite chilling:

m.facebook.com/story.php?st...

[Welshcatlady in reply to desquinn]

Thanks for posting that link, I had no intention of taking the test, because being a doubter, I believed it was likely to just be another scam to get your money. But having read the article I would implore anyone thinking of taking the test to read the article first.

[desquinn Partner Volunteer FMAUK Trustee in reply to Welshcatlady]

I have spoke to this test on several occasions on here and elsewhere and stressed that it was something that would:

- potentially not be meaningful as it had not be validated, but,

- also would not result in any beneficial effect as it would not give access to any other treatments.

I did not say about my own doubts about the science or the motivation behind it or not very definitely. However, the article is quite a takedown of the motivation and activates behind the company and the man.

[Welshcatlady in reply to desquinn]

Yes it is.

[Lupusrelative in reply to desquinn]

I imagine it depends which news you are reading.

No,it is not available in the U.K. In the US it is covered by health insurance. Yes, more research may be needed. Rheumatologists here are quite interested and positive about the results the test gives. 93% positivity for fibromyalgia. As in RA it has to do with the amount of cytokines that show up in the blood.

The FDA have also recently approved this test.

If health insurance and Medicare pay for it, that says something.

link.springer.com/content/p...

[desquinn Partner Volunteer FMAUK Trustee in reply to Lupusrelative]

I know FDA approval is relatively easy with tests and devices that have little to know risk profile and they do not tend to measure efficacy outcomes and not sure where medicare and insurance fall in their assessment process.

But the price has increased by 73% in a relatively short time period and if you read the article it was being promoted under (and continues to be apparently) false pretences and leaning on relationships that were not characterised properly. Promises broken and a lot of disingenuous behaviour. Also it is still only based on the initial studies and these have not been replicated.

But the two original points still stand

- potentially not be meaningful as it had not be validated, but,

- also would not result in any beneficial effect as it would not give access to any other treatments.

The charity has went from an ambivalent but hopeful stance to one where it is something we could not recommend for a number of reasons. There are other potential blood test work being done like the recent Kings college work or university of Utah among others. But at present there is no blood test for fibromyalgia that is accepted in mainstream medical practice.

Sorry forgot to say that I had read that before when this became popular in 2014/2015 and this stood out then as it does now hence why the need for it to be replicated and validated.

"Acknowledgments Dr. Gillis personally underwrote the study and owns EpicGenetics. Dr. Wallace was a consultant for EpicGenetics in 2013. Dr. Gavin, Karpenko and Barkhordar are employees of EpicGenetics"

[Lupusrelative in reply to desquinn]

As I said, yes, more research is needed but it is a step in the right direction. It has also been mentioned that a tb treatment may be the answer for fm and other autoimmune illnesses.Will be interesting to see if University of Liverpool and Kings College research comes up with the cytokine level theory.It is quite difficult to get FDA approval and not as you mentioned relatively easy. Oh, maybe I’m wrong about that considering the COVID vaccines which we were all so eager to put into our bodies.

[desquinn Partner Volunteer FMAUK Trustee in reply to Lupusrelative]

If you look at the John Oliver (LWT) skit about a few months ago on HBO about the ease at approving medical class 2 or 3 devices you will perhaps change your view on that although there is more serious commentary about that.

I would actually argue the covid trials have been as rigorous as other trials just expedited with resource and paperwork removed. If you look at a typical 15 year drug development cycle you will see the gaps where funding application, result review and just plain gaps of time are that could be removed and have been. But that's another argument.

If you read the article you will see the tb treatment is part of it and the latching onto one of the researchers in that field that has strong opinions and not good ones about epis candour and approach. Also he seems to be pivoting to covid of late.

As to a step in the right direction this has had about 10 years to be replicated and validated but has not been and if that story or expose is correct in even half of what it says then it is as sensible as getting investment advice from Bernie Madoff.

Anyway will leave it there,

[Lupusrelative in reply to desquinn]

You really are quite anti-American Des!BTW, I am from Liverpool and love John Oliver! Wonder why he’s not allowed to broadcast in the UK?

[desquinn Partner Volunteer FMAUK Trustee in reply to Lupusrelative]

If you read through my posts where I talk about the US you would not come to that conclusion at all and still have my US immigration book behind me when that option was very much on the cards. Bit less of an Americophile over the last 5 years or so but getting better in fact looking forward to red zone tomorrow night and the pats beating the bills on MNF.

That aside I am a bit confused why the above would cast me as anti American. The truth and accuracy has no flag and recognising deficiencies is part of the scientific method. If it was my comments on the FDA then I equally have a poor view of NICE in certain respects and appreciate the work of the CDC and many of the US scientists that work in the fibro field.

John Oliver's show is on UK tv on sky comedy at present but I presumed you were in the US from a comment above hence the HBO reference. I also love him and the way he is shaping American satire with hi mini moral crusades and oversized fluffy animals

Sorry, still really confused how you got me so wrong with not liking America from what I said

[Lupusrelative in reply to desquinn]

You always seem very negative about anything I post.

[desquinn Partner Volunteer FMAUK Trustee in reply to Lupusrelative]

not sure how that equates to anti American but also this is my take on this subject from the charities website on October 21st So I am just being consistent to the subject at hand fmauk.org/latest-news-mainm...

I think I replied positively to the fmaware post but cannot remember anything else I replied to from you either positively or negatively. I tend to respond to posts and their topics and do not really focus on who it is.

[caico in reply to Lupusrelative]

I agree

[luckylou52]

Have to agree with Des about a blood test for fibromyalgia cos if it was that simple to use as diagnosis it would already be available. As for tb medication again would only believe if was from a TB consultant / expert. When I worked in the NHS and worked with TB consultants they never mentioned this and they looked after all types of medical patients on the wards. TB meds quite often are changed as it depends on the type of tb so could be considered for other illnesses but I’d still want it confirmed by them and not someone I’m not too confident believing in. America does not particularly have a great record with the fda approval of drugs so I’ll wait