The more I listen to everyone involved in this business the more I regret just how much of a mess up (insert obscenity here if you so wish) my colleagues have made of this.
It is quite clear to me that you will need to doctor shop to find someone who has a constructive approach to ME.
On the other hand doctor shopping is very likely to bring people into contact with doctors who provide plausible 'biomedical' explanations that are just as bogus as FII or MUS or whatever.
I cannot judge the last case in the BBC programme. However, I am pretty sure that 95% of people given the diagnosis of EDS in the last ten years do not have a genetic connective tissue disorder responsible for their illness. They have an illness and they may be hypermobile but the two having nothing to do with each other. As many members will know, I have been close to the evolution of the 'EDS' story in the UK for forty years, so have some basis for saying this. (E.g. I was an author on one of the first papers purporting to show cardiac involvement in 'hypermobility EDS' and was later asked to take over the most prominent hypermobility clinic in the UK, but declined.)
So the situation is complicated. I suspect part of the problem is that parents want an explanation for a child's illness when often there is none - we simply do not know what is the cause. ME as a name has the advantage that it makes no claims about cause. EDS does and probably wrongly. Doctors confuse the natural desire for an explanation for 'looking for something that isn't real' or inventing an illness for the child. If anyone is fabricating illness in these cases it is the private doctor, or empire-building academic, who makes a nice living out of selling phoney diagnoses.
The situation is then compounded by the fact that the psychiatrists appear to have no understanding of how harmful inpatient care is. Not only do they have no solution to the parents' quest but make the child far more miserable than they would have been.
I think it may also be important to recognise that there may genuinely be parents whose attitude to the child's illness has a negative impact. But I think this is likely to be very rare and something quite different from the natural vigilance of parents looking for answers.
Above all what is needed is clarity about the facts. There is no doubt that there is a pattern of illness that can be called ME. There is pretty little evidence for there being real illnesses with names like EDS, MCAS, or even POTS that are responsible for chronic disability of the sort people are familiar with here.
I sat dawn with my coffee and read your post Johnathan and like the caffeine, you are so needed. In a world gone mad I'm not sure if I could cope without you, Science for ME and all the community.
I help support Fiightback and the situation is beyond words at the secret courts and the false record keeping along with the inability to find the right information that fits the condition of the child, is beyond comprehension. The amount of mothers packed off to prison or children taken away because a lack of a name to their child's illness is staggering. Courts, Education, Social Services along with PIP need a name for the illness and I'm not sure it is the parent pushing for a name.
Dr shopping for many of us is not an option due to that is the second red flag Dr Glaser looks for. The first is an unrecognised condition. That is another reason a name is useful. Most parents would not bat an eyelid at Medically Unexplained Symptoms, if that meant we were given the right information to support our child. But as we all know that is not the case.
The new tool kit for EDS is this helpful? Well from my point of view it could be. I'm not sure you would agree?
I suffered with many things including 5 miscarriages, cysts on the ovaries (psychosomatic then they told me I gave the wrong symptoms. The cyst had a tooth and hair that was clinging on to other organs) endometriosis not taken seriously (apparently I had a low pain threshold, I have given birth three times with not pain relief so I would question that) and all the other problems you get. My mum the same, and we both nearly died due the hysterical woman approach. Personally I don't care what you call a condition I just don't want my daughter going through what my mum and I went through.
https://www.rcgp.org.uk/clinical-an...-ehlers-danlos-syndromes-toolkit-for-gps.aspx
IBS me, my daughter, my son and me. It took me 2 years of my son declining in health, to ask for a test for my son for celiac I'm intolerant and my son who has ME form the age of 8 now 13 is celiac and I would say we both need to be tested for MCAS, he has POTS. When you read the history of Ean Proctor's mother, Sophia Merza and Merryn Croft you see the pattern emerge of PEM causing eating problems and with my son this is most deferentially the case.
We know that wheat intolerance can do to the lining of the gut and we know that top athletes have to be careful of over training. Looking at the two brothers crossing the line at their race you can see ME take shape. This is what happens to my son when he goes to the toilet on a bad day
. How he feels is the sames as Johnny we could learn so much from those in the sports field
. Henry Worsley on his epic challenge was found to have bacterial peritonitis, at the same time Maureen Hansen work comes out on the Gut will Redox and lack of oxygen in the gut give us answers?
When in PEM my son cannot eat potatoes, tomatoes, peppers, drink milk eat fruit or chocolate and after each meal he will go cold and IBS hits the roof. I know when he is coming out of PEM as he asks for a hot chocolate. This has been for last 5 years so not a fluke. Why is that? why is the sensitivity heightened when he he is in PEM?
When I started to get a grip on ME and the PEM state, I noted that just before my son went into a PEM state, deep purple marks would break out over his knees at first - he was 10 at the time no growth spurt he was still undiagnosed celiac so small for his age. When I was threatened with FII and courts I drafted in Dr Speight. He noted the headaches that I first thought were either connected with tummy migraines or sinus headaches. my son also had a long standing cough. Dr Speight questioned Hypermobility toes,ankles, legs, elbows and now fingers).
5 years on they just dismiss his hypermobilityor EDS and do not want to label him with another disputed condition. My thoughts is that if you have connective tissue that is showing on the skin, what is it doing to his joints and organs? How can I support my son and know how best to keep him active with POTS. When his joints like spent elastic bands, will building muscle really help and how can I do that with ME? When reading a book or laughing with his brother and sister causes his HR to go up to 200 and into PEM as walking or exercising we are truly missing something. We don't discover because we don't look at PEM or listen to those with the condition?
His marks are now across his back around his rib-cadge and they look aggressive and they upset me, for 101 reasons but mostly because this is not normal. He can hardly breath most of the time his chest feels tight and he says he cannot expand his chest enough to breath. His throat muscles act in the same way and when he is out of the PEM for a few days, this tightening eases. If I try to explain this to any medical staff we come in contact with, I'm treated like the demon mother or explaining something that simply does not exist in the medical world.
Compliance with the Drs understanding is necessary if you want to keep your child safe. However it stops us from learning.
If you listen to the mothers they tell a pattern of their children and those children that have grown up with this disease could hold some clues.
Ean proctors mother
http://www.ahmf.org/ww-ean.html
Emily Collingridge
https://www.me-pedia.org/wiki/Emily_Collingridge#Illness
Sophia and Merryn dorsal root ganglionitis
It took a lot of us to get Bethanie out, but it cost her family a lot more, her mother "Bethanie lost four years of her life, she lost the rest of her childhood, and I've lost my life savings," she said.
https://www.facebook.com/BelieveInBethanie/
https://www.bbc.co.uk/news/health-4...mtf2JNlxWIDXvMgzHXolpWpfPNsEmYxDWsmTzs-M_25go
We don't need a name or full facts we just want to know how to keep our kids safe. We end up doing harm because we are not supported and demonised. We may not have the medical knowledge and bark up a few wrong trees, just like science. But these marks are on a lot of our kids with ME and they are not normal?
