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Is CFS contagious? How can it be transmitted?

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Interesting discussion, that seems to come around every now and then...

Since learning that I have chronic bacterial infections as part of my M.E process (Bartonella, Chlamydia Pneumoniae and Lyme), and spending time on Lyme groups and listening to their stories, I can see that in some cases people are making their family members ill. Lyme is transmitted between mother and child and their is evidence of it being found in vaginal and seminal secretions as well as in tears and the gums.

My eldest daughter also has Lyme and has been very sick in the past with what was generally considered 'CFS'. I don't know if I passed it on to her maternally or if it is coincidental - I believe I may have been exposed before she was born, in which case all 4 of my kids may have it. She is now expecting a baby and we have fears that her child will also be infected. I have seen other cases of intergenerational Lyme transmission in others in the Lyme community.

When I met him 17 years ago my husband was one of the fittest healthiest people I ever met (not joking), and he remained so for some years. In recent years he shows signs of illness that we cant explain, but he doesn't totally succumb to M.E like symptoms. We have been worried about it enough to consider getting him tested, but instead he has decided to try herbals antimicrobials and diet - and he is feeling a little better for it.

I have met whole families in my Drs clinic that are infected and sick to varying degrees - think of John Caudwell - at least 5 family members infected with Lyme, sick and told they have things like CFS/M.E.

This is all complicated for my kids by the fact that I also have EDS III which is genetic. My birth mother also has M.E and may well be predisposed due to EDS - I also have a maternal female cousin who is sick. A LOT of people in the Lyme community have EDS, and a large proportion of those people go on to develop MCAS (as I have).

My M.E Dr finds a very large percentage of his patients have Lyme and or co infections and about 30% have EDS, another large proportion of those have MCAS as well - especially if they have been sick a long time, untreated.

You may wonder what this all has to do with M.E. Well, I believe Lyme is certainly one trigger, common in PWME, hard to eradicate once its been there a long time, maternally and sexually transmissible and if you have EDS and Lyme then it is very likely you will stay sick a long time AND pass on the genetic issues of this to your children AND possibly develop MCAS, making it almost impossible to treat the underlying infections.

If I had known I had these infections I would certainly have used condoms with my husband, but it is only in recent years we have discovered the infection in me, so a little too late.
 

Sledgehammer

Senior Member
Messages
270
I'm really sorry to hear what you and your family and are going through.
What you've written has probably answered a lot of the question I often wondered about this illness.

My late mother was very ill for years, and recently aquired medical records show she was labelled a hypochondriac by the quacks. Believe me she was anything but that. A very quiet and intelligent woman who head her head buried in medical journals in search for the mystery illness she was clearly suffering from.
She called it a Viper and said it was in all of us ready to attack at any given moment. In hindsight I fear she was right. My older sibling having the same issues, now me.

My better half was ill before we met nearly 18 years ago with a mystery illness.
Green gunge from the nose, fatigue etc etc. All that cleared up for her around the year 2000 but left her with a long term undiagnosed thyroid disorder. Now diagnosed she, apart from disturbed sleep, is like a Spring Lamb and has lots of energy. But she will crash if she pushes herself.

Can I ask how you got your tests for bacterial infections? Did you go private?
My GP's have never offered this only generic allergy tests.
 

Rvanson

Senior Member
Messages
312
Location
USA
Viruses are contagious

Assuming it is a virus. No one has even become ill with ME that I knew, yet I contracted it by eating a meal at a Restaurant 5 hours later. A cooked meal allows a virus to live? Perhaps so
 

TiredBill

Senior Member
Messages
335
Gingergrrl is correct to mention blood transfusion ban, such as in the UK. This also includes umbilical cord material from women. Post Viral Fatigue Syndrome (PVFS) a diagnosis that was made in the past before 'CFS' was created, these patients also cannot donate bone marrow, even when dead. So I'd take that on board in terms of potential risk.

However, there is no real safety information relayed to the public, so it's hard to say. CFS doesn't exist as one entity, it's a collection of symptoms, so in short answer, no CFS isn't contagious or an STD because you can't pass something the CDC created based on an individual meeting criteria of unexplained chronic fatigue.

However, within CFS are often misdiagnosed organic conditions, some of an ifection based nature, such as Lyme disease (which does have some evidence of transmission). In addition we don't know if ME (trapped within CFS, via 'CFS/ME' that the British created) is involved with pathogens no one has discovered yet. These could be anything from prions, bacterias, viruses and retroviruses. Retroviruses are passed on in DNA to the baby, but this is very controversial issue in 'CFS', as the research is never performed by government scientists, only independent scientists, who then have their careers ruined and their science discredited of any chance of an exogenous retrovirus being associated to CFS. (See Elaine De Freitas, Judy Mikovits). Times may change, and we might in the future see evidence of pathogenic HERV's (Human endogenous retroviruses), being associated to multiple autoimmune illnesses, and also CFS.

Without the correct cohorts of patients with signs of disease researched in repeat large scale studies (Using Fukuda criteria CFS is insufficient to gather meaningful data on any pathogen found), we can only speculate as to how 'it' is transmitted in CFS (if at all), but this doesn't get us any closer to the facts, because 'it' will never be the same for everyone with a CFS diagnosis because of the heterogeneous nature of the illness.

In very basic terms if an individual had a diagnosis of CFS, and this person was immune suppressed in a manner science currently didn't understand and was unaware they were harbouring intracellular bacterial infections, then they could pass anything onto others people from Borrelia, it's co infections, and/or viruses such as EBV from kissing for example. CFS patients don't appear to respond correctly to EBV, and EBV is highly contagious as is Chlamydia Pneumoniae, also found in CFS and Lyme sufferers.

Even today, it was in the press that an estimated 1% of the UK population is estimated to have Mycoplasma Genitalium, which is thought of an an STD. If 'CFS' patients have this infection at a higher rate than the average person, no one knows.

So anything is possible in 'CFS' in terms of future pathogen discovery, but we should remember that 'CFS' doesn't exist as a single evidence based diagnosed condition, so there will always have multiple reasons behind 'Fatigue' in CFS that may or may not be transmittable.

As for your question:



No one knows the answer to that question, until we find out if previously undiscovered infections exist in CFS, and how they work in the human body, it cannot be answered with any accuracy.

The only evidence I would say exists for this 'risk' in CFS, is quite a lot of folk with CFS diagnosis find out they actually have Lyme disease (Borrelia infection), and on that basis, yes, it may be transmissible, and thus whenever possible, use contraception anyway when engaging in sexual activity, as simple common sense rule whether someone is sleeping with an individual with CFS, or a healthy individual.

When it comes to sex, I would be careful rather than careless, but also mindful there is no evidence that CFS or ME for some sufferers, is a disease which may carry an additional new to science STD, or an infection passed on to others by airborne contagion such as sneezing. This doesn't mean the science won't change though in the future.

But as it stands, there is no evidence, so I wouldn't worry. Use contraception and wherever possible, enjoy your life.

CFS and ME are indistinguishable illnesses under all currently accepted diagnostic criteria. The illness is ME/CFS.

Fukuda is on the ash-heap of history as a diagnostic tool.

Bill