New Here - Looking for List of Bloodwork incl Cytokines

[KNBaldwin]

Hi. This is my first post. I have spent hours reading threads on this site and I am so very grateful for all the work put into this site. I am looking for a list of all possible bloodwork that could be related to ME or Long COVID and if possible, identification of any studies discussing the bloodwork in ME or Long Covid patients. I am creating a chart myself but then found this website and thought perhaps someone here has already done one. I have searched but cannot find one.

Thank you!

 

[Jonathan Edwards]

I am looking for a list of all possible bloodwork that could be related to ME or Long COVID and if possible

There isn't any as far as we know. It is all normal.

 

[Yann04]

Welcome KNBaldwin

Unfortunately there isn’t much thats useful with relation to ME since we don’t have a biomarker/replicated blood abnormalities yet.

Bloodwork will mostly be useful to rule out other conditions.

 

[Kitty]

Welcome, @KNBaldwin!

I'm glad you've found the resources useful—it must be a bit overwhelming for folk new to the forum, there's so much to look at.

Bloodwork will mostly be useful to rule out other conditions.

Yes, it's good to rule out other common conditions that can make people feel unwell and exhausted. But those panels are routine business for GPs, and they should exclude quite a lot.

 

[MeSci]

Welcome, @KNBaldwin!

 

[Ash]

Yes, it's good to rule out other common conditions that can make people feel unwell and exhausted. But those panels are routine business for GPs, and they should exclude quite a lot.

In England I'd say not.
I can get a full blood count whenever pretty much but that's it. Thats of course useful but its not sufficient. For tests that the GP could order- that don't require hospital consultant signs off- still doesn't mean that they will agree to if asked, and it's even more unlikely they'll volunteer any. At least not before the situation becomes absolutely dire.

 

[gillrich]

welcome aboard!

 

[richie]

Hi. This is my first post. I have spent hours reading threads on this site and I am so very grateful for all the work put into this site. I am looking for a list of all possible bloodwork that could be related to ME or Long COVID and if possible, identification of any studies discussing the bloodwork in ME or Long Covid patients. I am creating a chart myself but then found this website and thought perhaps someone here has already done one. I have searched but cannot find one.

Thank you!

TNF alpha gene expression If gamma GE various cytokines have been abnormal in me but my case may have involved tick borne or other infections are sarcoidosis so uncertain as to applicability to ME. Only available privately . It would be interesting to know how those with ME diagnosis fare in general on such assays and indeed how Long C , sarcoid and Lyme/post Lyme would perform.

 

[KNBaldwin]

Yann @Jonathan Edwards

Thank you all for responding to my first post above. I hope it is okay that I tagged each of you. I researched and made a list of about 40 things I wanted my sister's doctor to test. She has had ME for over 30 years and LC for over 3 years. All of her bloodwork this entire time has been normal with the exception of her thyroid tests because she has hypothyroidism.

Literally everything they have ever tested has been normal. Her doctor agreed (need his agreement so insurance covers it) to test 15 of the things I asked for and 8 came back abnormal with her IL-8 more than double the highest range and her IL-2 was 4x the highest value in the normal range. Her doctor asked me what I wanted tested next. I sent in another request of about 10.

My sister has her genome from Nebula which shows she is at a much higher genetic risk for colon cancer. Having high IL-8 when diagnosed with CC means poorer prognosis. Wouldn't having significantly higher IL-8 cause or contribute to the development of CC in people with a high genetic predisposition?

Is anyone prescribing medications to reduce cytokines in LC patients? I feel like 10 years from now researchers will confirm a higher rate of cancer in LC patients.

Does anyone know who the experts are on here for reducing cytokines?

For reference, my mom and I are both HLA-B27 positive. My sister is negative but positive for HLA-B44:02-01G. My mom was diagnosed with MS when she was 38. I was diagnosed with Sjogren's and (originally diagnosed with ankylosing spondylitis which switch to seronegative spondyloarthropathy) when I was 28 (28 years ago) I have been on cytokine blockers in the past like Humira.

I tried to get my sister into the JAk-inhibitor trial but she was denied based on her significant ME symptoms. She did a trial on prednisone about 5 months ago and saw dramatic improvement. Low dose prednisone did not provide improvement.

Any thoughts? Or can you point me to the right place to post this? I love this website but I think there are a few gaps in where to post or I just haven't figured it all out yet.

I really appreciate it! She means the absolute world to me.

(Anormal bloodwork so far: IL-2 very elevated; IL-8 very elevated; IgA low; IgE low; CD19% slightly elevated; CD20% slightly elevated; ANA-1:80 speckled; Leptin significantly elevated.)

(Normal bloodwork included IL-4; IL-6; IL-10; CD4/CD8; RF; TNF-a; CRP)

(I have requested the following. We are waiting to hear back from her doctor: repeat immunoglobulins,; IgG subsets; Th1; Th2; Th17; SPEP; B cell phenotype; IL-1B; IL-12; IL-17A; IL-23; sIL2R; iFN-y; CXCL9; CXCL10; B12; MMA)

Thank you!!

 

[jnmaciuch]

Hi @KNBaldwin, I’m sorry your loved one is suffering and you’re feeling the frustration of not having answers for her.

I can provide some context as a grad student who has worked on several projects involving cytokine measurement (in studies about acute infection, long covid, etc.). They can and do vary wildly across individuals, even the same person sampled 2 months apart can have very different values despite reporting no change in symptoms or functional capacity. Blips are expected.

The results highlighted in papers are nearly always a small but statistically significant difference between the averages of ME/CFS vs. healthy controls—but there will be a lot of overlap between values (and other studies often don’t replicate that difference). If someone has other symptoms consistent with a specific infection or other illness then cytokine data might support that story, but it generally isn’t used in clinical practice because without those other pieces of information the cytokine levels don’t inherently point to a problem.

I feel like 10 years from now researchers will confirm a higher rate of cancer in LC patients.

Some cytokines are linked to higher cancer risk, others with lower cancer risk, and in many studies you don’t know whether the association was a predisposition or just one consequence of the immune system trying and failing to control a problem.

 

[Jonathan Edwards]

Wouldn't having significantly higher IL-8 cause or contribute to the development of CC in people with a high genetic predisposition?

No, that does not follow at all. These things are complicated.

Is anyone prescribing medications to reduce cytokines in LC patients? I feel like 10 years from now researchers will confirm a higher rate of cancer in LC patients.

Cytokines do not generally cause cancer. These things are complicated.

Does anyone know who the experts are on here for reducing cytokines?

Anyone who claims to be an expert here is generally a quack. We know very litlle.

But, believe me, the forum members are trying their best to change that. It just needs to be done properly, otherwise people suffer badly from misguided medication.

 

[Kitty]

All of her bloodwork this entire time has been normal

In a peculiar way I'd see that as reassuring, because it's exactly what you'd expect. ME/CFS is almost defined by the absence of abnormalities.

I don't think you'll learn anything from dozens of tests, and it might be very hard on your sister to keep having to undergo them. Even if there was an atypical result, no one could say whether or not it relates to ME/CFS; that means no one could use it to guide treatment for ME/CFS. Unfortunately there isn't a treatment as yet, though we're hopeful that progress is being made.

 

[KNBaldwin]

In a peculiar way I'd see that as reassuring, because it's exactly what you'd expect. ME/CFS is almost defined by the absence of abnormalities.

I don't think you'll learn anything from dozens of tests, and it might be very hard on your sister to keep having to undergo them. Even if there was an atypical result, no one could say whether or not it relates to ME/CFS; that means no one could use it to guide treatment for ME/CFS. Unfortunately there isn't a treatment as yet, though we're hopeful that progress is being made.

Thank you once again for kindly responding! I really appreciate it. I absolutely understand what you are saying. Of course we want normal results but after years of illness they are not reassuring. Unfortunately, for my sister, it has been much harder on her to go decades having bloodwork done and be told it's normal.

She gets her CBC done every three months in what I think is just her doctor placating patients to believe he is doing thorough bloodwork. It would be no harder on her to add tests - to the extent they could be relevant.

She wants to know what ME / LC are doing to her. Even if a doctor says that this bloodwork is all related to ME or LC, it is monumental to her to be able to have proof that something is going on with her immune system.

Also, I want the bloodwork for several other reasons:
1. Family history of autoimmune disease & her specific genetic predisposition to autoimmune disease based off of her genome means at some point symptoms we are assuming are ME or LC may actually be an autoimmune disease with treatments:
2. If it identifies specific cytokines, I can follow the ME and LC research on potential treatments involving those cytokines and focus on those treatments firstif any are determined successful;
3. I am worried about her increasing cancer risks due to years of systemic inflammation and her genetic predisposition to certain cancers; and
4. I don't know that I agree that this is just ME/LC. And if these very simple blood tests point to something that has treatments for some of the symptoms, it will be life altering for her.

Kitty, I really appreciate that you have so kindly responded to my questions. It means the world to us to be able to throw out some questions and get some outside perspective.

 

[Jonathan Edwards]

She wants to know what ME / LC are doing to her. Even if a doctor says that this bloodwork is all related to ME or LC, it is monumental to her to be able to have proof that something is going on with her immune system.

As far as We know ME/CFS and LC do nothing to anything that can be measured on a blood test. We have at present no way of proving that there is anything wrong with the immune system. Even for diseases where we have a lot of understanding of the immune disturbances immunology blood tests on individuals are often not very useful.

1. Family history of autoimmune disease & her specific genetic predisposition to autoimmune disease based off of her genome means at some point symptoms we are assuming are ME or LC may actually be an autoimmune disease with treatments:

Predispositions to autoimmune diseases do not necessarily cross from one disease to another. DecodeME looked at the typical genes associated with common autoimmune diseases and found nothing that overlapped with a known autoimmune disease as far as I am aware. So there is nothing to look for here. There are some gene regions linked to ME/CFS but testing for them in individuals is not useful because the link is a weak statistical one.

2. If it identifies specific cytokines, I can follow the ME and LC research on potential treatments involving those cytokines and focus on those treatments firstif any are determined successful;

Much as for the genes, cytokine tests on individuals are unlikely to be useful. It is possible that IL-8 and TGF beta are involved in a pathway relevant to ME/CFS but even if they are it probably does not mean that a high level in an individual tells us more about that individual. and that being the case the sensible thing is to keep an eye on all studies of cytokines. Sadly, the overwhelming message so far is that blood tests for cytokines are normal.

3. I am worried about her increasing cancer risks due to years of systemic inflammation and her genetic predisposition to certain cancers; and

We have no evidence for inflammation in ME/CFS. This is a common fallacy. "Systemic inflammation" doesn't really mean anything. It is often used to indicate raised levels of cytokines or related markers like CRP. I don't think there is much evidence for these cytokines causing cancer. If cytokine blood tests are bad prognostic markers it is likely that that is because the cancer stimulates cytokine production.

4. I don't know that I agree that this is just ME/LC. And if these very simple blood tests point to something that has treatments for some of the symptoms, it will be life altering for her.

Making sure that ME/CFS or LC are correct diagnoses is very important. These diagnoses are often wrong. But to pick out less common other diseases you need a detailed clinical assessment and selection of unusual blood tests not very simple ones. Cytokine blood tests are not simple but in my experience they aren't much use for patient care. There are simple blood tests other than full blood count, such as biochemistry screen and vitamin D. They might pick something alternative diagnosis up but for a long standing problem that is relatively unlikely.

 

[Kitty]

She gets her CBC done every three months in what I think is just her doctor placating patients to believe he is doing thorough bloodwork.

I find that shocking, it sounds like a doctor whose only interest is in getting paid! There's no reason to do those tests in ME/CFS or Long Covid; maybe there is if she has other diagnoses, but otherwise it just sounds unethical. Doing needless blood tests isn't harmless.

it is monumental to her to be able to have proof that something is going on with her immune system.

Yes, many of us would like the same. This is my 50th year of ME/CFS and I still don't have any evidence of it.

I stopped looking years ago, though, because I know there's nothing to find. Even if it was possible to do a blood test that would give a conclusive result, it wouldn't change anything. There'd still be no treatment and I'd still feel like death dug up every day.

Something will be found one day, and in the meantime I might as well get on with having as much of a life as I can manage. Including getting angry about doctors who think it's acceptable to carry on like that!