Tilly
Senior Member (Voting Rights)
@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.
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?