Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

[Mithriel]

Um, skin turning blue, hair changes that sounds like nerve damage to me. And these damaged nerves cause pain.... it doesn't need any more than that for an explanation.

 

[Woolie]

The reason there is more pain is probably because in some ways we're getting unhealthier as society. Allergy, autoimmune, gut and brain diseases are more and more common.

I think its difficult to judge the absolute incidence of something like pain across eras. Historically, large sections of the population would have remained silent about it, due to inability to afford doctors and/or fear of job loss. Those that had the economic capacity to speak up would have faced social obstacles (for men, reporting pain may have been seen as weakness, and for women, they may be dismissed as hysterical or otherwise psychologised - Freud's patients are a nice example). Plus, people are living longer now so there is are more average life years per person than in previous generations, so more opportunity for chronic issues to make themselves evident.

But I think the real problem with evaluating the past is lack of records, and the likelihood of complaints being dismissed by either the patients themselves and/or others caring for them.

I'm also very sceptical of the claim that were getting unhealthier as a society. We're getting fatter, sure, but paradoxically, the incidence of cardiovascular disease has gone down (average age is higher, gap between men and women is shrinking, mainly because men's risk has gone down). And of course, we're living longer. For me, those positives seem huge and do I don't think I could really say we're "getting unhealthier" overall.

 

[Jonathan Edwards]

Looking through the comments, I don't see too much un-reasonable criticism. The study looks awful. It's uncontrolled and restricts a key term that jacks up response bias. Multiple treatments at once. The 92% having 0 pain after 2-weeks is a huge red flag for the diagnosis/admission part. No treatment is that effective.

Pain is normal and excepted. No big deal. CRPS is not that. Focusing on low-cost, drug-free therapies, though popular for obivous reasons, is not valid if the research backing them up is not valid. It has downsides too, it pulls attention and money away from quality research of the pain disorders.

The ideas behind the research are old cliches - the sickness role, sickness communities perpetuating illness.

This sounds like absolute nonsense, what are your thoughts @Jonathan Edwards

If these researchers actually believed in their treatments and their theories, they would be doing the studies right - they know how to do them.

I agree. Think it is entirely appropriate to flag these sorts of studies up on S4ME because they illustrate the pervasive problem of bad scientific methodology in the wider field that gets put under MUS or whatever. I think it is reasonable to be emotional too because it is time this sort of thing stopped.I get increasingly angry when I see such poor science.

As far as I can see from PubMed Sherry has never even attempted a controlled study. The general approach is eerily reminiscent of Wessely et al 1989 on how to do CBT in ME (before anyone has tested it).

 

[Jonathan Edwards]

It is an effort, both in CRPS and fibromyalgia in children to see if intensive multi-disciplinary treatments will change the course and allow these (mostly teens) to increase their function (go to school, etc).

Because the brains and bodies of children and adolescents are more forgiving and plastic than adults, the theoretical basis is perhaps, sound.

Usually teens, depending on the state of residency, can give medical consent. Sure there is some coersion no doubt. But having someone with you all the time, encouraging you to engage in activity doesn't sound like torture to me. And they can drop out, if need be.

I am interested that you raise this defence, @shak8. I find it very hard to be that generous.

The study seems to be from 1999. It was not an effort to see... because no valid study was done. It was introduction of a programme that was assumed would work.

I cannot see what the plasticity of the young brain has to do with the theoretical basis being sound. Apparently Sherry blames the mothers. We don't really know what the basis is.

Whether or not teens are legally able to give consent seems to me not relevant. They are too young to realise that health care workers may be interfering busybodies building empires.

Encouraging people with CRPS teenage in painful activity sounds very much like torture to me.

And dropping out is just regarded as being uncooperative by therapists.
I spent twenty odd years working alongside physiotherapists and their lack of insight into their motivations terrified me. I pretty much gave up referring anyone for therapies.
This may be S4ME but I think there is a much bigger problem with therapist-delivered treatments that the forum can legitimately try to address.

 

[Woolie]

Can we please separate ourselves and our emotions from identification with absolutely every other illness, such as CRPS in children?

I have to say, my view is the complete opposite to yours, @shak8. PwMEs are justifiably upset about how we have been treated, and are trying desperately to raise awareness of the problem with outsiders. Given the experiences we've had with our illness, we should be more aware than anyone how this type of paternalistic approach can cause harm. If we just take the view that our illness is "special", and readily buy into the same bullshit as long as its being dished out to other people, then what does that make us?

 

[Woolie]

This may be S4ME but I think there is a much bigger problem with therapist-delivered treatments that the forum can legitimately try to address.

Completely agree. Here at S4ME, we can be a voice for change that goes beyond our own illness.

 

[Saz94]

This is orwellian. How can you forbid patients to talk about something that is a primary outcome metric.

'Orwellian' is right.

Torture is treatment
Illness is recovery
Scientific critique is harassment

Orwell knew how language can affect thought. If we rename torture as "treatment" then it suddenly becomes acceptable! And if we rename scientific critique as "harassment" then it suddenly becomes unacceptable. And if we change the meaning of 'recovery' in a clinical trial... well, you know the rest.

 

[adambeyoncelowe]

You can read reviews of the David D. Sherry on Vitals.com (health professional reviewing website) they make interesting reading. Here are some:







Why didn't the podcast producers check to see what patients were saying about this doctor ? I literally just had to google "David D. Sherry" and "complaints" to find these.

There's a really worrying comment here.

Dr. Sherry’s insistence that patients dance with him and his constant proximity to patients concerns me. It isn’t okay to say no to dancing, even if DANCING WITH AN OLD MAN makes young girls uncomfortable (as it should). Don’t send your children to Dr. Sherry. His program is torture.

This is not okay. He sounds like a sadist and there's a very real safeguarding issue here. It's beyond creepy.

 

[chrisb]

This is not okay

It is clearly OK so long as its not with a member of the department.

 

[rvallee]

I was thinking of this the other day and since the thread got bumped I'll try and make sense of it.

This idea seems to be based on research that shows that unexpected pain feels worse when you anticipate it, when you are told that something will hurt but do not know how bad. In this research people anticipating an unknown level of pain, which could even be trivial, feel it more because of the anticipation. So not anticipating it would lessen the pain, which follows that avoiding thinking about it may help lower the pain.

But this is only true of unexpected pain. Chronic pain is very much known, that's what makes it chronic. I personally find that anticipating and dealing with known pain makes it more bearable. Not easy, but this is very much like anticipating a side tackle, the impact is much lessened by muscle contraction and trying your best to deflect the worst of the hit. It's kind of a learned skill. It only works when the pain is known, but that is precisely the case with chronic pain.

Resolve plays a huge role in enduring suffering, even if it does not make it disappear. People dealing with chronic pain have resolve in bulk, not by choice but sheer necessity.

So the underlying assumption for this model is based on conditions that do not exist with chronic pain. The evidence simply does not translate to the different conditions, as it is strictly the surprise element that confuses the response. Take away the surprise, which is not present in chronic pain, and you are dealing with a different reality.

This is more relevant to ideas like CBT and ACT and whatever in dealing with pain than this here with inflicting more pain, but it's relevant in that the whole thinking about pain within medicine is filled with invalid ideas that lead to all sorts of weird hypotheses like this one.