Guardian piece on"Lyme"

[richie]

It seems that if you have enough money to take all these expensive tests there's a good chance you might end up with a Lyme disease diagnosis. I simply do not trust these tests based on what I've read about them and the clinics who sell them. The whole situation is infuriating.

This is currently the second most viewed article on The Guardian. With so many desperate parents of kids with Long Covid right now, it is a dangerous time to be publishing these sorts of unevidenced and stigmatising claims.

Obviously as Trish says this is the writing of a desperate parent, and they deserve sympathy, but that doesn't excuse throwing the families of children with ME/CFS under the bus by promoting the most dangerous and stigmatising myth about ME - that we are subconciously seeking 'secondary gains'.

I just feel huge sympathy for Millie and her family after reading this article. We are all so badly served by the NHS for ME/CFS and related conditions that it's natural for parents to search for answers and in desperation try everything, and to want to believe ancedotes by others and what convincing sounding doctors tell us.

Yes, there is some misinformation, and I don't know what to believe about Chronic Lyme, but I don't think it's fair to criticise the author of the article who is a desperately worried parent. And we are not the child's doctors, so can't possibly judge, nor should we, whether her illness is indeed caused or triggered by a tick bite, or by Covid, or something else.

A lot of NHS clinics call GET pacing. Even the PACE trial called GET and CBT forms of pacing, and therapists of various descriptions are taught that pacing for conditions such as pain and fatigue involves finding a baseline then adding activity. It's so pervasive that even AfME accepted for years a pacing guide written by a physio that recommends pacing-up. I googled pacing for pain, and this example of a pacing guide popped up. We have a particular understanding of pacing for ME/CFS, but it's not shared by many NHS staff, so it's not surprising the article gets it wrong.

But they are promoting a harmful and stigmatising myth about us in a national newspaper. People reading that some people with ME get better after confronting what they 'gain' from being sick in the Guardian today is going to cause tangible harm to pwME/LC, whether that's friends or loved ones (even children) of people who read and believe the article, or their patients or people they encounter through work or whatever.

We can be sympathetic but being a parent doesn't excuse using your platform to spread stigma in this way.

If you reject the idea that ME is an umbrella term , which might include cases whichc respond to psychobehavioural approaches , then you are right, But a diagnosis of ME is not based on precision so the recognised cohort is in reality mixed and may include patients who respond to a variety of interventions. Post successful intervention these should not be referred to as ME but as "possible X therapy responsive syndrome " though post is not prompter, but this is difficult to maintain when diagnosis is symptom based " I got the symptoms so I got ME" is hard to argue against while diagnostic practice is as it is.

 

[richie]

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.

3 without 2 is also not great. 2 does not inevitable lead to such outcomes and treatable but missed conditions such a chronic Lyme may well be worth fighting against.

 

[richie]

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

This bit is particularly horrible:


What the article said was:

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 got some attention on Reddit. As always, it's infuriating to read:

Apart from the fact that most GPs think CFS = fatigue, a lot of them read Suzanne O'Sullivan and believe in GET according to this thread. What a waste of tuition fees if this is the result

It’s very clear that this means psychology..

It’s not like the advice already is to do as much as you can without getting PEM..

If you don’t define it properly it will continue to include a mishmash of different things.. DecodeME showed that it’s possible to properly identify a cohort for research purposes.

No comment needed.

This is apparently the nuanced take:

I wonder if they would be able to apply the same kind of scrutiny towards the multidisciplinary, functional, etc. babble?

There is good criticism of German tests and bad criticism just as there is good and bad advocacy. If criticism is prefaced by "Chronic Lyme does not exist......." and a resort to "all in the headism", I tend to switch off. Regardless of varied opinions among doctors in Germany re some German tests, doctors' journals e.g Aetzteblatt still use the term Chronische Borreliose or Borreliose mit Chronischem Verlauf (course) . They accept B can and does persist. while many remain sceptical of some forms of testing.

 

[rvallee]

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

Totally made up. Zero evidence for any of this, they are describing their model, not reality or data.

 

[rvallee]

Quite desperate as well.

They completely dominate the issue, so I wouldn't say there's much desperation here. They will keep dominating everything until one day it all comes crashing down, but until now they are not the least bit desperate, in fact this is basically taunting, and it's not the first time they've done it. This kind of message only comes from people with total control who know their victims can't do anything about it.

Because good luck finding more than a handful of physicians would find anything objectionable here. More than anything this is the problem, it's not even a few bad apples spoiling the bunch, the bunch is already fully spoiled and any good apple that comes in contact with it gets spoiled in turn.

 

[richie]

Totally made up. Zero evidence for any of this, they are describing their model, not reality or data.

"there is no reliable evidence linking a chronic Borrelia infection to her symptoms; and the effectiveness of long-term antibiotics has not been demonstrated"

Are they talking about Milly or to those symptoms in general? Can they account for the content of the following https://www.bmj.com/content/369/bmj.m1041/rr-1 or https://www.lymedisease.org/bmj-response-ilads-lyme-guidelines/
Are they familiar with the work of Brian Fallon of Colombia or the work at Tulane incl novel antibiotic combinations (which may negate the need for long courses). Do they bother to look at this kind of thing or might it imperil "hope"?
Once it was thought that xmg abx fro 3 weeks was adequate , now it is 2xmg. Knowledge advances evidently and they should really show engagement with other opinions rather than bald statements of what is wrong with Milly or that evidence is lacking for approaches with which they disagree.
What if their theory is partially valid but some bug takes advantage of a dysfunctional immune system and need treating?
Where is their expertise in post treatment Lyme syndrome - whether it be it do with persistent infection, elevated alpha interferon, non viable residues etc.? What of biostressors incl from opportunistic infections taking advantage of a system gone awry?

If Garner believes in hope as necessary to recovery I might agree, but not to the point of disregarding other views which might suggest that sth else besides hope and an explanation of a theory is needed, when therapies based on explanations have not proved universally successful and claims that Milly's type of symptom are not linked to Borreliosis are mere assertions. What is their reliable evidence that Mi;;y's symptoms are related to their theories and is it not possibel that such dysfunctions arise int he context of another organic stressor e.g Lyme.

I would say they live in a world of black and white but that this arises because they do nto want patient to question their explanations as this will worsen results (not enough hope) and those with sth else can go elsewhere. Back to CBT/GET "reasoning". Back to Engels , not truth but outcomes, which may be useful but not at the expense of the otherwise sick. They cannot be trusted to be objective because they are not interested in objectivity if it is at all inconvenient, hence the failure to engage more broadly with contemporary Lyme scholarship.

What grounds are evident for Milly's development of the alleged dysfunctions? They give no backing for their own suppositions re her case.

​

 

[Holinger]

They completely dominate the issue, so I wouldn't say there's much desperation here. They will keep dominating everything until one day it all comes crashing down, but until now they are not the least bit desperate, in fact this is basically taunting, and it's not the first time they've done it. This kind of message only comes from people with total control who know their victims can't do anything about it.

Because good luck finding more than a handful of physicians would find anything objectionable here. More than anything this is the problem, it's not even a few bad apples spoiling the bunch, the bunch is already fully spoiled and any good apple that comes in contact with it gets spoiled in turn.

I understand what you are saying but from my perspective they are pushing a pseudoscientific recovery program that the reader will pick up on. Maybe the current situation is worse than what is in my head particularly regarding the BMJ piece but for straight ME/CFS I feel it is more being regarded as a narcolepsy adjacent disorder/disease than biopsychosocial unexplained physical symptoms that can be rehabilitated. Maybe I’m wrong.

 

[Sean]

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.

This is the line the PACE crowd push about any bad outcomes from GET. They claim it is all just inappropriate implementation by inadequately trained therapists, not anything wrong with the therapy itself.

Totally made up. Zero evidence for any of this, they are describing their model, not reality or data.

I wouldn't even describe it as a model. More like a lurid fantasy they cannot let go of.

 

[MrMagoo]

I wish someone would ask PG if he would be open to the idea that his views are nothing special and would he consider not boring everyone with them.

 

[richie]

"Persistent physical symptoms arise when biological defence systems, evolved to keep us safe, go awry.

If we all shout "not always, why not?" and "not in every case displaying such symptoms" they will come out with "we didn't say always..."

"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".


Does "many" mean a majority or a considerable number? What about those for whom such approaches do not work? Are they only the few vs the many or are they also many alongside many responders and worthy of equal consideration? Can a bespoke plan not include treatment for Lyme or any other biophysical problem since we know that bio-stressor are also generators of danger signals as are life changes entailed in chronic untreated biophysical illness - Lyme, sarcoid etc.?

"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”.

Success in two cohorts in Norway does not imply universal applicability. So, if we are talking science not anecdote, it has on the presented evidence been SHOWN to be effective in two cohorts not "SHOWN to be effective including two cohorts" Where is the other scientific work? Propaganda phraseology. Reminds me of "CBT/GET , its based on science you know" the rest is not and should not be used. PACE failed to show scientific validity so the game has moved on and a similar "shut down" threat to those who dissent.

I am all in favour of anecdote but let's be honest. Trouble is in the world of hope and headology, honesty is at a premium because "hope" heals and soft truths work better if presented as hard facts- but not if you need abx.

The Recovered site includes a story of a guy who treated his symptoms with detox strategies. Wonder how he got on there and if he still need a good "explanation"?