New Scientist: Chronic Lyme disease may be a misdiagnosis of chronic fatigue syndrome

Chronic Lyme disease may be a misdiagnosis of chronic fatigue syndrome

CFS, also sometimes known as myalgic encephalomyelitis, is itself a controversial condition: some think it involves immune system problems, perhaps triggered by an infection, while others believe psychological factors may contribute.

“I think most people who think they have chronic Lyme disease in the UK probably don’t,” said Sarah Logan of the Hospital for Tropical Diseases in London. “There’s so much stigma associated with chronic fatigue. Our treatments and support network [for CFS] are not great.” Logan says she sees at least two people a week in her clinic who have self-diagnosed themselves with chronic Lyme disease in the UK.

 

I think this is a plausible. Of course, there is the issue: are they saying Chronic Lyme could be ME, ME/CFS or CFS?

 

This article is pretty much just downright appalling, imo, but this sentence stands out: "Lyme disease can occasionally cause long-lasting symptoms...but this is rare."

Ten - 20 percent of 400,000 cases annually in the US alone, that do not improve with mainstream treatment protocol, is far from rare. If my math is correct, that's 40,000 to 80,000 cases in just the US every year, year after year, that contract the disease and do not get better. How does that qualify as "rare"?

 

Indeed. Or CF - which is what Logan refers to in the quote in the OP

 

There certainly seem to be people taking advantage of patients by giving out dubious Lyme diagnoses.

"Our treatments and support network [for CFS] are not great." - That's something of an understatement!

 

And those giving out dubious CFS diagnoses.

 

The "press conference" was organised by Science Media Centre

SMC: Lyme Disease in the UK

Journalists came to the SMC to hear the scientists and clinicians discuss aspects such as:

• How do we estimate cases of Lyme disease and are current estimates likely to be too low?
• Are case of Lyme disease on the rise in the UK? Why? Is climate change having an impact?
• What is Post-Treatment Lyme Disease Syndrome (‘Chronic Lyme’)? How does it fit in with CFS/ME?
• How is Lyme disease diagnosed? How good are the tests? How do they differ from those used abroad?
• What is being done to combat Lyme disease?

 

Pretend it's not a thing and embrace repackaged imported propaganda to that end?

 

I unfortunately cannot trust anything that receives a seal of approval from the SMC on such controversial topics. Zero credibility to the point where I would put more trust in the opposite of whatever they deem fit to do a PR blitz.

It's very likely that some people with ME, or other diseases that are superficially confused with ME by non-experts, are misdiagnosed as having Lyme disease but there is too much evidence to ignore complications from untreated Lyme disease, which is probably the norm since ability to diagnose properly outside of textbook perfect cases is basically non-existent.

None of this means chronic health problems from untreated, or treatment-resistant, Lyme disease do not exist. I don't know either way and no one should have confidence in any assertions beyond "we don't know". This is the only true assertion here, nobody knows anything about either ME, Lyme or any of the other chronic illnesses on the blacklist.

Frankly the whole thing is a complete mess, one that is wildly understated in the oblique shot at the disastrous (not poor, absolutely disastrous) state of affairs of ME treatments. Everything relating to the treatment of ME is disastrous and British medicine has been ground zero for most of this, in particular the SMC who frankly has no business getting involved here.

This is what happens when nonsensical garbage is promoted without evidence, in fact against evidence. The whole thing, everything related to chronic illness frankly, needs a reset, a completely clean slate. This is not the way to do science, public health or medicine. Stop playing with people's lives like we are freaking lego figurines, dammit.

 

Not wholly accurate, but I agree with the gist. Some people know a campaign of misinformation and mischaracterization has been going on against Lyme patients who are not cured. Indeed, some stalwart anti-Lyme peeps have gone so far as to declare - and propagandize - that chronic Lyme patients by definition must never ever have even had Lyme. Ever.

 

Putting aside the source, it's not a crazy hypothesis. AFAIK, the symptoms of 'chronic Lyme' and ME/CFS are broadly similar, and the evidence of ongoing infection in 'chronic Lyme' has not been exactly settled. If it is the case (as is my view) that ME/CFS is caused by some ongoing dysregulation caused by an initial - but not ongoing - insult to the immune system, then it is entirely plausible that Lyme disease is one of those infections that, similar to Epstein-Barr/Glandular Fever, can disproportionately lead to ME/CFS.

 

Pretty irritating to have people speaking at the Science Media Centre about the problems of stigma surrounding CFS.

Have they spoken out about the way the SMC has promoted spin and prejudice?

 

Seems plausible. And tick borne illness is more than just the Lyme spirochete - there can be other coinfections along with Lyme

The diagnostic ambiguity with both ME and neurologic post-treatment Lyme complicates discussion of whether Lyme and ME are the same or not. And at least one US ME doc that I know has said its difficult to differentiate clinically between post-lyme and ME. But given all that, this study reported differences in spinal fluid proteomes between post-treatment Lyme patients and Fukuda CFS patients. According to the article, the post-Lyme patients had prior Lyme disease "which met CDC surveillance case definition criteria and persistent neurologic features, including cognitive impairment and fatigue despite appropriate antibiotic treatment."

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044169/​

Hard to say if the difference in proteomes just an artifact of the specific cohorts examined. I don't remember seeing a followup study - may have just missed it.

 

Is this just the psych brigade bringing more people under their 'care' for pwME?

Deny chronic Lyme, give them ME diagnosis, shuttle them into GET / CBT. Retire early.

 

I must confess this study always struck me as a bit over-the-top obvious. Kinda cool at first glance, but once you get past who the authors are (no small feat), and really read the study, all it basically says is - and I am paraphrasing liberally - we can tell the difference between sick people who meet all the criteria for a diagnosis of active Lyme from patients who may satisfy a loose diagnosis of CFS who specifically have been screened to ensure they do NOT have Lyme.

To sum up: Active Lyme patients have different things in their CSF than people who don't have Lyme, and from people who may have CFS and also don't have Lyme.

Whoopee.

 

Pretty certain this is about right. A lot of people that say they have chronic lyme never actually presented with the symptoms of lyme and got treated for it in the past, it was just on the basis of questionable tests done by questionable doctors (or possibly self diagnosis). A lot of these people say they had CFS before, but then they found this doctor that did this test and they have it (there is no test for chronic lyme - unless you're talking about late stage lyme disease, but most don't present with symptoms of that, and that's treatable with short term antibiotics, after which some people can develop chronic lyme).

If someone had lyme disease, got treated for it, and then developed symptoms after that, I believe they have Chronic Lyme, or Post treatment lyme disease syndrome. However many seem not to be like that. In those cases they almost certainly have CFS or another condition.

Since so much misinformation about this topic goes around the internet, and given that this forum likes to pride itself on caring about science, everyone should read the CDC pages on Post treatment lyme disease syndrome and lyme disease here if they aren't familiar with this stuff: https://www.cdc.gov/lyme/postlds/index.html and https://www.cdc.gov/lyme/index.html.

 

Where in the world did you get that idea? People who thought they had Lyme never had symptoms of Lyme?

What? Of course chronic Lyme has to be late stage Lyme - it's definitional. And most people with chronic Lyme don't present with symptoms of late stage...? Which symptoms? You mean classic B31 strain swollen knees and such? That's only one symptom of many. I don't know how to respond here. Late stage Lyme fails short term abx more often that early disseminated, and that fails between 10% and 20% of the time.

The CDC's history with Lyme rivals that with its history of ME/CFS. PTLDS is political nomenclature. Quoting the CDC about Lyme is like quoting BPS doctrine about ME/CFS.

 

But these are not currently active Lyme disease patients - the paper says that the patients had had prior Lyme disease according to CDC criteria, had received "appropriate" antibiotic treatment, and still had persistent neurological and cognitive features. According to the Infectious Disease Society of America's position - and I believe CDC's at least historically - if patients received a short (e.g. 10-28 days) course of antibiotics, then they were appropriately treated and therefore no longer had active Lyme disease.

Completely agree. The progressive action in the US appears to be with the HHS Workgroup on Tick Borne Diseases, a congressionally mandated group chartered to review HHS efforts related to all tick-borne diseases, provide cross-agency coordination, and develop recommendations on research priorities and changes in the HHS response. I'm sure it has its own issues but it seems to be doing good work and is certainly more credible than anything CDC has done in this area. And unlike the disbanded CFS Advisory Council, its being congressionally mandated should drive focus and progress. The briefs that the WG has developed so far are here - https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/index.html#brief-persistent.

 

that's impressive growth. :[

suppose you get tbd as a child, but don't get any treatment. 40 years later, what could it look like? lots of symptoms? just a few? is it like meicc? is it distinctive?

are answers to the above paragraph known? are they consensus among smart members of the lyme community?