Virology Testing

[Hawk1]

Hi All,

Hope everyone is doing as well as can be.

I'm still pretty new to MECFS. (First Onset January 2020, followed by remission by September 2020 and then second onset February 2023).

I wanted to get tested for the common viruses and other factors possibly causing/involving my MECFS.

After trying my best to research through these forums it seems the common viruses involved in MECFS are EBV, Herpes, Coxsackie and a few others.

I wanted to know if there was a guide/list for all the possible viruses + other factors to get tested for, so I can request this from my GP/PCP.

Thanks Guys!

 

[Cipher]

Here's a great roadmap made by @Hip.

 

[Hawk1]

Hey Cipher,

Thanks for that, looks really helpful, will read.

 

[Hip]

Thanks for that, looks really helpful, will read.

If you go to the viral testing section of the roadmap, this lists all the main viruses linked to ME/CFS, and details which tests ME/CFS doctors use to test for them, and how ME/CFS doctors interpret the test results.

Generally ME/CFS doctors use antibody tests rather than PCR, because the infections are found in the tissues of ME/CFS patients, and not so much in the blood. So if you test using PCR on a blood sample, you will often get a negative result. But if you do an antibody test, ME/CFS patients often have chronically high antibody titres, which to an ME/CFS doctor suggests some ongoing infection in the body tissues.

 

[Hawk1]

If you go to the viral testing section of the roadmap, this lists all the main viruses linked to ME/CFS, and details which tests ME/CFS doctors use to test for them, and how ME/CFS doctors interpret the test results.

Generally ME/CFS doctors use antibody tests rather than PCR, because the infections are found in the tissues of ME/CFS patients, and not so much in the blood. So if you test using PCR on a blood sample, you will often get a negative result. But if you do an antibody test, ME/CFS patients often have chronically high antibody titres, which to an ME/CFS doctor suggests some ongoing infection in the body tissues.

Thanks Hip, yes, will definitely read the whole roadmap!

 

[Hawk1]

Hey guys,

Just went through the roadmap.

How exactly do I go about getting tested for the common MECFS associated viruses?

I am based in England, London and my GP said only EBV testing (via blood test) is available, so I'm a bit confused.

Thanks guys!

 

[Hip]

I am based in England, London and my GP said only EBV testing (via blood test) is available, so I'm a bit confused.

Some tests are unfortunately not available in the UK, such as the coxsackievirus B and echovirus antibody tests using the sensitive neutralisation method recommended by Dr Chia. So the only way to get these is to send a blood serum sample to a lab abroad. This takes a lot of work. Your best bet at present may be via ARUP Lab in Utah USA, or the labs in Greece, Serbia or Brazil.

Cytomegalovirus IgG antibody testing may be available on the NHS; if not it can be obtained privately in the UK here.

I am not sure if the Epstein-Barr virus EA IgG diffuse test used by Dr Lerner is available in the UK, either privately, or via the NHS. I have never seen any such EA IgG tests in the UK.

If you are outside the US, viral testing for the ME/CFS-associated viruses is complicated.

 

[Hawk1]

Oh my gosh,

This is extremely disheartening to hear. I thought at least viral testing would be straightfoward, but it truly seems every aspect of diagnosis and treatment of MECFS is unbelievably difficult

 

[Hip]

I thought at least viral testing would be straightfoward, but it truly seems every aspect of diagnosis and treatment of MECFS is unbelievably difficult

Sadly viral testing is hard in the UK.

Though note that antiviral treatment in ME/CFS is a bit of long shot, and often does not lead to benefits. So even if you work out which viruses are involved in your ME/CFS, that's not a guarantee of treatment success.

For example, a small percentage of patients with coxsackievirus B or echovirus infections do benefit from treatments such as oxymatrine, tenofovir and Epivir, but most don't. Likewise, a small percentage of patients with EBV, cytomegalovirus or HHV-6 may benefit from Valcyte, but most don't.


However, there are ME/CFS treatments you can try which do not depend on the type of viruses you have. Such treatments include:

ME/CFS treatments that have a track record of helping, and are employed by ME/CFS doctors, include:

GENERAL ME/CFS TREATMENTS:
Methylation protocol (includes B12 and active folate; can improve ME/CFS)
Low-dose naltrexone (only works for around 10% of patients, but when it works, it works well)
Abilify (can make major improvements in ME/CFS, but may stop working after some weeks)
Nimodipine (calcium channel blocker which improves blood flow to brain)

BRAIN FOG AND FATIGUE:
B12 methylcobalamin injections, or Greg's B12 oils
High dose vitamin B1 (thiamine)
Piracetam (good supplement for brain fog)

PEM:
Pyridostigmine (prevents or reduces PEM)
Cumin (Cuminum cyminum) one level teaspoon (prevents or reduces PEM)
D-ribose (to speed up PEM recovery)

See also the PEM-busters thread.

GUT ISSUES:
Probiotics and prebiotics (can improve fatigue and brain fog)
Rifaximin antibiotic for IBS, SIBO or gut dysbiosis (improving SIBO will also improve ME/CFS)
Herbal protocols for SIBO (can work better than antibiotics in the long term)




More information can be found in the roadmap, and also the list of ME/CFS Recovery and Improvement Stories.

It's possible your NHS doctor may be reluctant to prescribe some of the above drugs. For that reason, ME/CFS patients often end up buying their own drugs at prescription-free overseas pharmacies.

 

[Treeman]

I'm a patient with immunology NHS. I got them to carry out testing for cytomegalovirus, hhv6 enterovirus etc, but really had to push hard and have a sympathetic consultant. However everything came back negative so I question the quality of the tests.

If you haven't seen an immunologist I would suggest that you ask your GP for a referral.

Good luck

 

[Hip]

I got them to carry out testing for cytomegalovirus, hhv6 enterovirus etc

This NHS enterovirus antibody test is unlikely to have been by the sensitivity neutralisation method recommended by Dr Chia. It was probably by the CFT, ELISA or IFA methods, which Dr Chia finds are often not sensitive enough to detect the chronic low-level enterovirus infections in ME/CFS.

 

[Treeman]

This NHS enterovirus antibody test is unlikely to have been by the sensitivity neutralisation method recommended by Dr Chia. It was probably by the CFT, ELISA or IFA methods, which Dr Chia finds are often not sensitive enough to detect the chronic low-level enterovirus infections in ME/CFS.

PCR test for, HHV 6, enterovirus, Coxsackie B, Paraechovirus, all negative.

Serology for Lyme's, negative.

Antibodies negative for cytomegalovirus and positive for EBV antibodies

 

[Hip]

PCR test for, HHV 6, enterovirus, Coxsackie B, Paraechovirus, all negative.

PCR is usually negative in ME/CFS patients, as the viruses linked to ME/CFS are not typically found in the blood, but are hiding in the tissues. This is why ME/CFS doctors normally use antibody tests rather than PCR.