Evidence that M.E. isn’t contagious?

Hi, I have recently started a new relationship and my boyfriend has admitted to having a slight worry that he can ‘catch’ M.E. from me. Does anyone know something I could give him to read to reassure him that it isn’t contagious? Thanks

 

Others here may know more but I’m not aware of any studies that would suggest it’s sexually transmissible by showing for example that spouses or partners of ME patients have a greater chance of developing ME than the average person. The retrovirus (XMRV) claim was subsequently refuted by other investigators who showed that the original result was due to a lab contaminant. There’s also no independently replicated evidence of any chronic infection in ME. Absence of evidence is not evidence of absence though.

 

Normally I'd say that sort of question in a close relationship requires a slap round the face with a wet fish (him not you) but assuming he's worth hanging onto, this is what I would say as an explanation based on the available evidence:

'while an initial infection is implicated in the onset of ME/CFS there is no evidence of any ongoing infection being the cause of the condition, further the implicated infections include common disease agents, for example Epstein Barr virus, to which most people will have multiple exposures in their life without ever getting more than a cold or maybe a flu. The likelihood is that ME/CFS only manifests in people who have some kind of genetic vulnerability, and even that has only limited heritability and is certainly not transmissible. In what seem to be very rare case of partners both getting ME/CFS it appears this is just a random event where both individuals are exposed to a similar common illness and both have independently (and possibly very different) genetic vulnerabilities.'

Now tell him he owes you flowers (or some non allergy causing alternative) !

 

This thread? You’ll either get flowers or a wet fish, by way of a bonus.

 

This may not be written clearly anywhere.
All I can say is that as a medical professional who has been studying the evidence on ME in detail over 8 years I have no reason to think it is contagious.

In simple terms ME is not an infection but a reaction to an infection, like an allergy is a reaction to a food or drug. Just as you cannot 'catch' an allergy there is no good reason to think you could catch ME. Whatever the trigger infections for ME are they are everywhere and yet only one person 500 gets ME. Nobody has found evidence for people with ME continuing to harbour trigger infections any more than anyone else.

 

Well at least he takes it seriously enough to want to avoid catching it himself!

Logic says to me that it cant be - otherwise all the thousands of husbands/wives/carers would be catching it, and they dont. The instances of people in same family (ie blood relatives) developing it suggests genetic link/predisposition not contagion.

The MEA might have something written on this, maybe ask them via email or fb

 

Given that ME can be precipitated by different viruses or even no virus, I would argue that this is strong evidence that the ME itself is not a virus, that it is not something that can be transferred from one person to another.

Further given that up-to Covid 19 the most common trigger virus for ME has been the Epstein Barr Virus (ie glandular fever/mononucleosis) which is exceptionally common, avoiding someone with ME is likely to have a negligible impact on an individual’s exposure to that virus, just as now avoiding people with Long Covid is unlikely to impact on your risk of catching Covid.

 

If its catching its low likelihood and very slow to the point where no one has conclusively shown it to be the case. But I don't think solid evidence against it being contagious has been determined but neither has solid evidence for contagion been shown either. I haven't papers either way to prove or disprove it.

I recall a paper looking at the blood of patients showing that healthy cells put into the blood of ME patients show the same weird effects as ME patients cells suggesting there is something in the blood that could be passed. IIRC for a while the NHS didn't take blood transfusions from ME patients as a result but I don't believe they stipulate that anymore. Over the years finding any virus or bacteria in the blood has proved all but impossible so if its present its well hidden in the tissue and its not getting out in a way we can find it in any fluids/discharge. So whatever it is (and Chris Pontings work suggests its either LPS or Covid spikes) doesn't look like its contagious and the only danger is blood transfusions. AFAIK there hasn't been a replication of Ron Davis' finding on cell danger response in ME blood either nor a paper so its relatively weak evidence.

 

I wish this info had been available when I was first diagnosed over 3 decades ago. It would have saved some concern, and mistreatment. Of course ME research was extremely sparse then, and only marginally less so now.

 

Even recovered ME/CFS sufferers are not allowed to give blood, ostensibly because it 'may cause a relapse'. Whether you believe that or not is up to you.

But unless you're planning on mingling blood or giving him a blood transfusion lol, then i think that neednt be a concern either way

 

Not just the NHS. A ban on blood donation was brought in, in a number of countries following the XMRV debacle, Wikipedia is accurate on this:

https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Blood_donation

"In 2010, several national blood banks adopted measures to discourage or prohibit individuals diagnosed with CFS from donating blood, based on concern following the 2009 claim of a link,[190] between CFS and a retrovirus which was subsequently shown to be unfounded. Organizations adopting these or similar measures included the Canadian Blood Services,[191] the New Zealand Blood Service,[192] the Australian Red Cross Blood Service[193] and the American Association of Blood Banks,[194] In November 2010, the UK National Blood Service introduced a permanent deferral of donation from ME/CFS patients based on the potential harm to those patients that may result from their giving blood.[195] Donation policy in the UK now states, "The condition is relapsing by nature and donation may make symptoms worse, or provoke a relapse in an affected individual."[196]

 

It is possible that there is an ongoing viral presence in ME since enterovirus and EBV both have strong mechanisms to evade the immune system and persist. There is also some evidence that covid does not clear the body. I feel the question is still open enough that I stopped giving blood and have opted out of organ donation despite believing strongly in both.

Having said that ME, like polio, is a rare reaction to common infections so someone is more likely to get infected and develop ME from sitting next to the wrong person on a bus than to a partner.

Blood relatives may get ME but that must be because of a genetic component not proximity.

 

I've haven't any medical experience but I think this is what has happened too.

I think I have even had two different reactions after two different infections unfortunately.

1. The first when I was 20 years old. I was given a vaginal pessary after an infection and right from that first tablet I had a reaction to it. It changed my whole microbiome composition, left with life long pain on examination, etc
I have still to find out what that pessary was that they gave me back in the 80's but I do now have my old notes at home with me and I just need a doctor to have a look. Just to add further on this I recently had to see a psychologist about my operation and she said that she had had other female patients who also had experienced similar. Completely healthy but then an infection/tablet changed things - a reaction occurred and permanent change in homeostasis.

2. I then caught a very nasty flu or cold about 10 years later and it was this that began my ME onset. I have often wondered though whether my first problem made me vulnerable to the flu/ME mix but it's hard to know if they fit or are two separate occurrences.

 

I personally would not donate blood/organs for several reasons:

• Donating blood could harm my health. PwME may have low blood volume for example.
• There could be something in my blood that makes someone sick. I tend to think more chemicals than pathogens, but maybe we have high levels of common viruses or something.
• I doubt my organs would give someone ME, but nobody knows if they function poorly, which ones do, or how.

I've told my family I'm not an organ donor for those reasons, but that ME researchers can have whatever tissues they want, and autism researchers can have dibs after that.

 

Contradictory, that pwME were, and are disallowed from donating blood due to potential harm it may cause the pwME, but at the same time this illness has, and continues to be viewed in some quarters as psychological.

 

I put it in my will: no organ donation. I don't know. Maybe it won't do any harm. I just don't know. No one does.

 

I have been married twice each time over a decade with partners and zero contagion even with "marital relations". If there was actually contagion from ME we'd all long since have been rounded up and dumped on an isolated island somewhere like lepers used to be. Instead the stigma is usually around psychogenic theories
I would tell him it is currently classed as a neurological illness by the Who and is similar to Multiple Sclerosis. I'd show him the new Precision Analytics genetic research which strongly suggests a genetic cause and say that from the research to date is thought most likely due to a faulty internal immune system response to a viral / bacterial infection trigger (often common ones like chicken pox, EBV, herpes, Lyme etc). The viruses themselves would have been normally contagious/infectious during acute infection phase but ME itself is not an infectious disease but instead most likely an internal immune system malfunction similar to auto immunity but rather than a reaction to oneself its reacting to a ghost illness that's finished or dormant and not knowing when to switch off. I think there is also a fair amount of genetic evidence of it running in families and being inherited.
Hope this helps.

 

If ME was contagious we probably would have found out by now. ME is neglected but we do a lot of surveillance of infectious diseases.

 

Thanks everyone for your replies. I've passed all the messages to my boyfriend and I think it has helped put his mind at ease.

I also contacted the M.E. Association as suggested and they sent the following message:
"Thank you for contacting the ME Assocation.
It's great he feels he conforatable to share his concerns with you. ME/CFS is not contagious, it normally follows an infection that triggers ongoing disability. There may be a genetic component but there hasn't been enough research to prove this.
I have taken the following quote from the MEA Clinical Research Guide by Dr Charles Shepherd discussing the condition:
'A consensus is emerging that ME/CFS may be a three-stage illness involving predisposing, precipitating and perpetuating factors.
Predisposing factors probably include a genetic predisposition (Albright et al 2011; Crawley and Davey Smith 2007) – evidence for which also comes from twin studies carried out in America (Buchwald et al 2001).
Precipitating factors include infections, viral in particular, but occasionally an immunisation or exposure to a toxin or pesticide. Chu et al (2019) have described factors involved in the onset of ME/CFS, as well as courses of illness, in a US cohort.
Perpetuating factors are described in the following sections covering infection, immunology, muscle, central nervous system and gene expression. Emerging evidence also indicates that low-level immune system activation, involving cytokine activation and neuroinflammation, and an autoimmune component, could be key factors in the pathogenesis of ME/CFS.'"