Guardian piece on"Lyme"

[duncan]

Surely giving these specific practitioners airtime on a science forum is not a good thing. One specific German lab diagnosed a young Australian girl I knew and she had never been bitten by a tick. She was really ill but it was not Lyme disease.

Who will be the arbiter of which practitioners receive airtime?

For that matter, which medical approaches make the cut when in Lymeworld it's still a situation where far too many issues remain unresolved? 2T testing is still a crap shoot, the C6 is falling out of favor, and although there is a bevy of MTTTs emerging, many FDA-approved, most tests remain indirect, which means nobody really knows anything other than maybe a patient was exposed. Somewhere. Sometime.

More to the point, despite a push for revisionist history, my understanding is that 20% of Lyme patients diagnosed by conventional methods remain ill despite receiving CDC compliant treatment protocols.

 

[duncan]

I think it is useful to have information on all these private labs and physicians because it gives a perspective on the extent of bad practice.

Again, who decides what qualifies as good practice when Gold Standards are pretty much absent in Lymeworld? It's been my experience that good vs bad practice is largely a political distinction. Diagnostics remain a coin flip, treatment success seem still dependent on timing, and even with prompt treatment, long term studies still seem to gravitate to that 20% rate that has haunted Lyme patients for 50 years.

Except that that is exactly what you get from fake medicine. Publications from people who do not do properly controlled studies will be a waste of time anyway.

If Lyme has taught us anything, it may be that these observations can apply even when properly controlled studies are involved.

 

[Evergreen]

I think it is useful to have information on all these private labs and physicians because it gives a perspective on the extent of bad practice.

I agree. I think these types of discussions are very useful, as people with ME/CFS or not-yet-diagnosed-with-anything need to know that a positive test for Lyme from certain labs is meaningless. It can save people (who don't have Lyme) from spending a lot of money unnecessarily, from adding a label that may do little other than make them seem even less credible to doctors, and from any harm that might come from an unnecessary treatment. It can alert people that maybe the doctor they think is wonderful, is not so wonderful after all, and their time and money might be better spent elsewhere, or not at all.

 

[duncan]

I agree.

Me too.

I think these types of discussions are very useful, as people with ME/CFS or not-yet-diagnosed-with-anything need to know that a positive test for Lyme from certain labs is meaningless

Many clinicians believe that a positive Lyme test from ANY lab is meaningless after an accepted treatment.

It can save people (who don't have Lyme) from spending a lot of money unnecessarily, from adding a label that may do little other than make them seem even less credible to doctors, and from any harm that might come from an unnecessary treatment.

Ok, but I wouldn't be so concerned about what any doctor deems credible when you've ME/CFS anyway - or Lyme potentially - because most don't bother with learning anything more than what they need to know to keep their business running. Put another way, regardless if you're slapped with an ME/CFS label or a Lyme one, your credibility is likely to take a hit.

It can alert people that maybe the doctor they think is wonderful, is not so wonderful after all, and their time and money might be better spent elsewhere, or not at all.

Sure. It can swing the other way, too. But discussion/debate is the main asset of a forum such as this, at least in my eyes. It can shine a light on biases irrespective of the practice or source.

 

[ukxmrv]

When I read the Guardian article I was expecting an ending with a full recovery. Was gutted to read that it was only 'hope' that they had after all the expenditure etc. I felt sick in the stomach having been sold 'hope' so many times myself. The poor family.

 

[MinIreland]

If patients are left with no recogition of disability, no financial support, no social inclusion, and ultimately, no vision of a future worth living as long as they continue to be disabled, they may react in three ways:

1. Give up entirely.
2. Try to cure their disability (if they have the resources to do so). This leads to increasingly nonsensical, expensive and risky approaches.
3. Try and live as best as possible with the disability.

Society often encourages number 2 and discourages number 3 due to the fear that a positive, accepting attitude will prevent a recovery that might somehow be possible. Number 1 is often viewed as depression and not as an understandable response to adverse circumstances.

To me, it's so fascinating that healthy people think that accepting and try and live with the illness/disability to the best of your ability (pun intended) equals giving up and no longer 'wanting' to get better.

 

[Troutwish]

Except that science does not work that way - to support what you like to see!

I think it is useful to have information on all these private labs and physicians because it gives a perspective on the extent of bad practice.


Except that that is exactly what you get from fake medicine. Publications from people who do not do properly controlled studies will be a waste of time anyway.

There is more than 'red flags' here. There is enough to discount it all as bad practice - whatever reality science finally uncovers.

Indeed. I fear so.

 

[Evergreen]

Many clinicians believe that a positive Lyme test from ANY lab is meaningless after an accepted treatment.

I'm not sure what this means - meaningless for what? Diagnosing a current active infection? Diagnosing a chronically ill state following Lyme? Distinguishing between current and previous infection? Determining whether treatment has been effective or not?

Ok, but I wouldn't be so concerned about what any doctor deems credible when you've ME/CFS anyway - or Lyme potentially - because most don't bother with learning anything more than what they need to know to keep their business running. Put another way, regardless if you're slapped with an ME/CFS label or a Lyme one, your credibility is likely to take a hit.

Oh I think it's always possible for your credibility to go lower, and it's worth hanging on to the shreds. For example, I think if someone with ME/CFS goes in asking for a blood test to ascertain their blood group so they can go on a diet that they've been told will suit that blood group, credibility goes down. It's worth not doing those things.

The "German lab" issue is so well-known that the mere mention of it will be detrimental to the patient. I know when I got to that phrase in the Guardian article, I groaned and thought "Oh no." But Germany's a big place with a lot of labs.

Sure. It can swing the other way, too.

If you mean that people might realise that their mainstream doctor is not as awful as they thought, then I agree.

But discussion/debate is the main asset of a forum such as this, at least in my eyes. It can shine a light on biases irrespective of the practice or source.

Absolutely.

 

[duncan]

I'm not sure what this means - meaningless for what? Diagnosing a current active infection? Diagnosing a chronically ill state following Lyme? Distinguishing between current and previous infection? Determining whether treatment has been effective or not?

Yes, yes, yes and yes. So, all of the above.

Oh I think it's always possible for your credibility to go lower, and it's worth hanging on to the shreds. For example, I think if someone with ME/CFS goes in asking for a blood test to ascertain their blood group so they can go on a diet that they've been told will suit that blood group, credibility goes down. It's worth not doing those things.

Nod. But what I was trying to convey is not to place too much value in whatever they might think - they are far too wrong far too often at the expense of people like us.

 

[Evergreen]

Yes, yes, yes and yes. So, all of the above.

And they might be right in many cases.

Nod. But what I was trying to convey is not to place too much value in whatever they might think - they are far too wrong far too often at the expense of people like us.

I think a certain amount of scepticism is a good idea. But too often people start seeing mainstream medicine as the enemy, thwarting their access to effective treatment. And so they miss where mainstream medicine is right.

 

[Troutwish]

As some of the people reading this thread probably haven’t followed the link, I thought I’d re-post the information here:
—-
I don't have another link for this that discusses the documentary in English

Documentary: Undercover in German Lyme Clinics (2017)

Short summary:
Several totally healthy danish journalists as well as 4 well known totally healthy danish tv-personalities sent their blood samples to both Arminlabs and BCA Clinic in Augsburg.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

https://forums.phoenixrising.me/threads/documentary-undercover-in-german-lyme-clinics.55493/

—
Also, though not directly relevant to Lyme disease, it does speak to infection testing at Arminlabs:
—
This is a thread on a paper on the results from Armin labs, which promotes itself a lot for Lyme and tick-borne infections in Europe.

There were similar high rates of diagnosis in both patients and controls

Human enteroviral infection in fibromyalgia: a case-control blinded study, 2022, Armin Schwarzbach et al

https://www.s4me.info/threads/human...ded-study-2022-armin-schwarzbach-et-al.28644/

I notice that Dr Carsten Nicolaus features in the documentary after the minute 41 on the phoenix rising article. Unfortunately it is one of the few parts in English.

Does anyone know whether Zembla is considered a reliable source of journalism?

 

[rvallee]

Why is it always this number for all of these types of treatments?

Everyone knows 60-70% of statistics are made up.

 

[Jaybee00]

Everyone knows 60-70% of statistics are made up.

If they said 20-25% you know they might be telling the truth. When I had plantar fasciitis the success rate of every single one of their likely bogus treatments was always like 60-70%.

 

[Wyva]

Letter responses to the article in the Guardian:

Failed by the NHS on chronic fatigue illness

One of them is from Prof Paul Garner, Dr Maria Pedersen and Dr Alastair Miller (who would have thought...):

"Milly’s exhaustion is typical of a group of conditions known as “persistent physical symptoms”. They arise when biological defence systems, evolved to keep us safe, go awry. Approaches that work for many are based on knowledge of how the brain, thoughts, feelings and activities interact. This knowledge is explained to patients in a dialogue, relating stressors to brain-generated danger signals; and this becomes integral to a negotiated, bespoke rehabilitation plan. This approach has been shown to be effective, including in two well-conducted, recent trials from Norway, one for people with the post-Covid condition, and one for people with “medically unexplained symptoms”."​

You can the read the rest at the link.

 

[Jonathan Edwards]

"Milly’s exhaustion is typical of a group of conditions known as “persistent physical symptoms”.

Nothing could be more unprofessional than providing a diagnostic opinion for someone whose story you have read in the papers!!

These people appear to have no understanding of what safe, considerate medicine is about.

Maybe this is how you are supposed to provide "hope" for these poor people who have already tried this tack?

I imagine that the Guardian journalists might be a bit confused by all their friends giving such different opinions too.

 

[Utsikt]

Unfortunately, it seems that Milly’s mind-body approach was implemented in a suboptimal way. This led her to feel responsible for her symptoms, rather than understand that they arise from the body’s natural responses. Such feelings of guilt can hinder recovery, and should have been carefully addressed.

Comrade Garner is always right. I will work harder.

 

[Trish]

How dare they write such garbage about a person they have only read about in the paper. Extraordinarily unprofessional.

 

[Holinger]

How dare they write such garbage about a person they have only read about in the paper. Extraordinarily unprofessional.

Quite desperate as well.

 

[Evergreen]

How dare they write such garbage about a person they have only read about in the paper. Extraordinarily unprofessional.

I agree. Except for them, it's become ordinarily unprofessional.

This bit is particularly horrible:

Unfortunately, it seems that Milly’s mind-body approach was implemented in a suboptimal way. This led her to feel responsible for her symptoms, rather than understand that they arise from the body’s natural responses. Such feelings of guilt can hinder recovery, and should have been carefully addressed.

What the article said was:

We tried to remain open-minded. We tried a type of talking cure called the MindBody Reconnect which had revitalised a friend. Milly didn’t enjoy the expensive online sessions but doggedly stuck with it. I’m sure it works for some sick people. For Milly, it was a disaster. She became convinced she was responsible for her illness because she could not think herself well.

So there's nothing to suggest that suboptimal implementation of a mind-body approach led her to feel responsible for her symptoms, and everything to suggest that Milly did not improve. What any professional should point out is:

(a) don't give money to a load of non-professionals who call themselves practitioners, have a site with a gmail address and who will "train" you to do what they do for more money https://www.themindbodyreconnect.com/
(b) don't expect professionals to provide an effective mind-body intervention either, whether NHS or private, but if you get a good professional providing supportive care, they might help Milly cope with her very difficult situation

If they really wanted to object as professionals, the most useful thing they could have done is raise well-evidenced concerns about the validity of tests from some German labs.

Instead, they've demonstrated exactly why parents like Barkham are driven into the arms of German labs and "practitioners" with "protocols".

By contrast, Tom Pond's letter is compassionate and helpful:

It was heartbreaking to read Patrick Barkham’s account of his daughter’s illness, initially diagnosed as ME/CFS (chronic fatigue syndrome), later found to be Lyme disease. I was diagnosed with ME/CFS in 2019 and know too well the challenges faced with medical gaslighting and ineffective treatment options. However, the article states that they “were given the usual advice about pacing – gradually increasing exercise – which is challenged by some ME patient groups”. This conflates pacing (a recognised and helpful energy-management principle) with graded exercise therapy (aimed at gradually increasing a patient’s physical activity limits).

The latter is a flawed treatment principle that is no longer part of the National Institute for Health and Care Excellence treatment guidelines due to there being no proven clinical evidence of benefit, and – worse – patients frequently reported that it caused them harm.
Tom Pond

 

[richie]

"The syndrome is clearly an umbrella term for different illnesses that are poorly understood by modern medicine. We met people who had recovered thanks to talking cures. One told me his ME disappeared when he took a course of psychological treatment in his 20s and understood what he had to gain from being “tired” all the time: respite from being under pressure and daunted by the world. What did Milly have to gain from being tired, we wondered? Why would a nine-year-old decide to be ill?"

This article is infuriating - I came to the exact same conclusions about my ME and went from mild to severe so why promote this nonsense as if it represents most of us?

There is no evidence that ME is an umbrella term apart from the fact that people who promote lyme and viral persistence quackery constantly state it is.

Perhaps there are subgroups, perhaps not. But I hate this phenomenon of people who escape the stigma of ME only to turn around and stigmatise us to prove they're one of the normals...

Edit: They've written this whole article about Lyme but the poor child isn't any better and doesn't seem to believe it will work!

'And what’s the future for Milly? “Because I’ve tried loads of things, it’s hard to believe this will really work,” she says. “I’ve lost faith in medicine and practitioners. I’m not feeling much better either. It’s difficult to think of the future right now – where my life might lead.”'

Just goes to show you how ecstatic getting away from the ME/CFS stigma makes people.

A diagnosis of ME, when another disease has not been excluded creates an imprecision in the use of the term ME. This compounds the problems already arising from diagnosis by symptoms. . Persistent borrelia and post treatment Lyme syndrome (which may include persisters) is a nasty condition, symptomatically confusable with ME and diagnosis of such has the potential to remove a cohort which should not be corrupting the ME cohort - though there may be overlaps in pathology, There is a potential win/win here which is made less likely if pesistent/chronic Lyme and PTLS diagnsose are cast as "quackeries". They may be correct differentials.
Any one-up-manship after alternative diagnosis (to ME) is regrettable of course, but relief at getting a treatable of even recognised diagnosis is understandable since ME still does carry a stigma, which it should not. Having had possible ME/CFS but two possibly missed exclusions, I have a personal concern re. diagnosis.