A descriptive, retrospective case series of patients with factitious disorder imposed on self, 2021, Berar et al

Jonathan Edwards said:
@Tilly,

As you probably already know, I have been following this story of bendy joints for 40 years, having started the first hyper mobility research clinic with Rodney Grahame at Guy's in 1978 or thereabouts.

Over that time I have seen a complete lack of meaningful evidence for joint hyper mobility being the sort of problem that people like Alan Hakim now suggest. (Alan was one of my registrars, so I know these people well.)

I contacted a paediatrician who has a special interest in hyper mobility a year or two ago and she pointed out that the only decent studies on populations we have tend to show that hyper mobility is not a major risk factor for generalised pain. The evidence on fatigue is as far as I can see zero. I asked the LSHTM group about their ME Biobank cohort and they said there was no sign of hypermobility

I do not discount the possibility of there being some weak association but I think it is unhelpful to patients to tell them that ME and hEDS are linked or indeed that bendy joints are somehow a cause of widespread pain. Before doing that we need to have some proper evidence - not work on hearsay like the BPS people. And remember that the idea that fatigue goes with hyper mobility is spread by the BPS people as much as anyone, following the paper by Knoop.

I will say no more on this particular thread because we have covered it all before but I think it is important not to put out unsubstantiated medical ideas.
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The problem here is that all young people hide the fact they are in pain, especially when they dismissed as they are with clinicians. This fact was proven by the NICE guidelines. It is also hard as a parent due tot he accusations and default setting of Fii to get over the complexities when you hare in a state of constant anxiety of those Fii accusations.

Joints are not looked at, so how do we know in any meaningful way if they are affected. You may get someone who will look for the normal knees, elbows, thumbs, little finger, hands to the floor, but that is not a good test is it? The other issue is why does this fluctuate? For instance if they celiac disease missed in the first place, or they have gut issues or diabetic, the pain is through nerves not only the bendy joints. But bendy joints are a pain when you roll over on your ankles constantly, bashing into things, are constantly writing or sitting as you do when you are a child.

There is no doubt viral infections, autoimmune and environmental elements impact connective tissue. So why are we not looking at the joints and connective tissue and nerves? ALL joints and the other issues, that have connective tissue like the mitochondria? I keep saying it, we must keep talking about this as it is vital for our young people and not dismissing if we are going to give meaningful support to; not only the science but also the children that end up traumatised because their reality is dismissed. We must demand research in these areas such as longitudinal studies and case histories of those that have lived the trauma of Fii. Find the issues and address them when services are involved.

Children and young people with ME are never asked but dismissed, so I don't see anyone looking for the issues in a way that meets their needs or their health. This has been left with the understanding of a few and they are being dismissed. There is no meaningful research because nothing is looked for when our children go to the Drs or Clinics, so how can anyone tell with any certainty that conditions do not exist and how can young people say what is important, if they are traumatised because they are accused or their parents are?
 
If you don't look you don't find. In children this is especially true .

There is little established literature - hardly surprising given the paediatric research offerings in UK.

When the science used to back up legal.proceedings is Crawley et al what hope is there?

My daughter's pain and mobility have worsened particularly over the past 12 months. She is now 20 but still appears to be growing.

She describes it as being similar to ( almost a progression of with an overlaying of something else ) pains that were dismissed as " growing pains" when she was 13/ 14 so pre ME in hips, knees and feet ( feet had arches issues ) . It now affects head, neck and shoulders too. She has always been as flexible as a brick.

There are posts on parental forums indicating many pre ME " growing issues" - could this play into predisposition ? Needs studied but not much liklihood of it being done here.

She does seem to have issues with tendons and ligaments which again are dismissed at GP level. Her relaxed posture for hands and feet is almost " clawed" and muscles can be ridiculously tight - perhaps taking the strain from issues elsewhere. Neck tightness affects dizziness and cognition but the neuro consult we await will in all probability look at her file and tag FND onto current diagnosis.

If there are many Long Covid paediatricians it may shine a light on post viral paediatric complications - it seems that interest is only piqued when someone medical is directly affected .

We don't even have adequate paediatric symptom lists for kids with ME . Anything that is not on currently defined lists is simply discounted. Kids are not listened to.

We are missing so much - particularly important when there may be a better prognosis for this group.
 
Firstly, I think that factious disorder probably does exist as a mental disease, maybe a compulsion like OCD but I do not think we can trust psychologists not to diagnose it too easily or badly intentioned people to exploit it for personal gain. A few years ago now but a report found that Munchhausen's was apparently diagnosed in some hospitals in the US when they felt they might to be sued or to cover up mistakes.

At 14 I never had any problems with bendy joints I associated with the ME though I did go over on my ankle a lot. That was mainly because I kept missing pavements and tripping but ME balance and ataxia accounts for that.

What you describe in your daughter is a problem in ME. My hands claw all the time as soon as I stop thinking about keeping them straight. Often I lie in bed and feel as if I am completely rigid, a sure sign I have overdone things.

Since CFS and its emphasis on fatigue the myalgia aspect of ME has been seriously neglected as well as the moving joint pains that were accepted as part of the syndrome in the older days.

All the problems of pain in ME need examined and acknowledged but muscle problems in particular should be one of the first things a doctor asks about during examinations.
 
By the sound of things listed here and on all forums in social media a forensic examination of those who know EDS hEDS POTS Mast Cell autoimmune diseases and now microclots and dig deep and see if we can lay this as organic biomedical ignorance or a patient that is having a hard time either way factitious disorder is the wrong wording for any patient is not a medical person and therefore can only ask for symptoms to be explored.

Like any science or research it needs to be robust and examined in detail but in this case when children can be taken it should be proven beyond any doubt and that is not happening.
 
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