MELODY Study, Imperial College - Covid 1... - Vasculitis UK

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MELODY Study, Imperial College - Covid 19 in-home antibody testing research study

May7 profile image
May7
18 Replies

I received a letter last month (February) from Imperial College/NHS for the MELODY Study saying,

"We have chosen your name at random from a list of people who may either have a rare autoimmune disease or type of blood cancer which is usually treated with immunosuppressive treatment held by the National Disease Registration Service".

I volunteered of course, and have received the kit and done the test.

I'm pleased to say that my test showed Positive results for the longer lasting IgG antibodies. Although this test is not 100% accurate at an individual level, I feel that it is an encouraging indicator.

I was also pleased to be able to contribute to the questionnaire about life and covid fears, plus effects on my mental health.

Has anybody else here been approached and done the test?

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May7 profile image
May7
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18 Replies
Nadine99 profile image
Nadine99

From reading on the FB site, many Vasculitis people have received this. We've just done my husband's today.

AmyS1 profile image
AmyS1

I have done the study and was very disappointed after 4 vaccines no antibodies!! I had previously had antibodies it is only 8 weeks after my last vaccine! On Infliximab metoject and steroids.

May7 profile image
May7 in reply toAmyS1

I'm sorry to hear that. Hopefully it's true what they say that it isn't necessarily so. I just checked and my last jab was 7 weeks ago, so hope it keeps up! I am on 5mg Preds and 1000mg mycophenolate per day as maintenance.

2534 profile image
2534

Yes I have the kit and will test today. I had a private test so it will be interesting to compare although I guess you don’t get an actual figure for antibodies. The one done already was 53 micro grams /

2534 profile image
2534

I too have Vasculitis

May7 profile image
May7

I think I should have mentioned that I had my 4th Jab 7 weeks before this test. Also, that I have been on 5mg Prednisolone with 1000mg Mycophenolate per day for my EGPA.

NYinLON profile image
NYinLON

I did my test yesterday, and like you, was pleased that my result came back positive for 'G' antibodies. I have MPA and had my 4th jab in late January.

EbonyWillow profile image
EbonyWillow

I’ve just done the test and have positive IgG only. I have EGPA, on Rituximab, last infusion 22 December 2021, have had three Pfizer vaccinations, last one 15 November 2021.

May7 profile image
May7 in reply toEbonyWillow

That is very encouraging, being on Rutuximab and having had your last jab a couple of months before me. I'll be most interested in seeing the collated research results and statistics regarding people's different circumstances.

Mooka profile image
Mooka

I did my test a couple of weeks ago. I know I have some antibodies as I’ve being doing the ONS survey. I was really pleased to see this break down to IgG and IgM and was pleased to see a faint line in the igM as my immunoglobulin levels have been wiped out by rituximab. I’ve had four vaccines but it has been suggested to me that I may get antibodies from the immunoglobulin replacement therapy. I hope this study brings the answers we all need.

DevonLottie profile image
DevonLottie in reply toMooka

Mooka. I receive igG replacement (privigen) but had a clear line indicating igG antibodies for covid. Of course this test isn't 100% accurate but suggests even with replacement therapy there's hope for us!

DevonLottie profile image
DevonLottie

Yes I did this yesterday and I too have igG antibodies. Very reassuring news.

gibson100 profile image
gibson100

Yes.Tested positive but potentially inconclusive apparently

AndrewT profile image
AndrewT

Dear May 7,

I am part of this 'Program', amoungst some others too. One of the reasons I was given a Third, then Booter, jab was, I'm sure in part anyway, because I proved to have 'NO' antibodies- after the first two Jabs.

I haven't had a Follow Up, for a While now, so maybe I will Contact them.... in case I have been 'forgotten'- well you never know! (unlikely as 'They' have been so On The Ball, regarding the Vaccines.)

I think this Study is associated with the University Of Oxford, if memory serves???? I am also Enrolled with Addenbrooke's Hospital and Ipswich Hospital- where my Consultant is- and maybe even with The University College Hospital London, where I was first Treated, though this is now 'highly unlikely' by now.....

I was asked to Take Part, in a "Study Of How Vitamin 'C' Affects the Vascular System" many years ago now, I was even 'Promised' a copy of the Results- I never got it though. (Oh well I hope the Research Helped 'Others'.)

So, to answer your question May7, yes I am- even if I can't be Too Sure if I'm currently 'On The Books', so to speak.

I am personally ALWAYS happy to Take Part, in Research, especially after 'everything' the Medical Profession has 'Done' for me (Saving My Life and all that!).

AndrewT

May7 profile image
May7 in reply toAndrewT

The research study that I tested for is by Imperial College, and associated with Cambridge, Sheffield and Nottingham universities. I hope you have been part of this as well, and well done for all you do.

AndrewT profile image
AndrewT in reply toMay7

This Sounds like the Addenbrooke's Study, so yes this too!

2534 profile image
2534

Yes, I completed the Melody test and found I was negative. In common with others here it seems that the culprit is Rituximab. I had no idea it was such a heavy suppressant'

lismacb profile image
lismacb

Hi. Also took the Melody Study test and unfortunately no response whatsoever. Negative on both and also on Rituximab. Disappointed after 4 jabs.

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