This is a complex presentation. It sounds like she has the right people overseeing her care and without having all the specific details I don't think I have any specific advice to add. I think it is important that she remains under the review of the rheumatology team as there are obviously some unus...

Hi This is an interesting area as you mention as there is an overlap with symptoms and it is an area which is being researched and I know Prof Newton in Newcastle is interested in this in adults. For young people whom I see who meet the criteria for a CFS/ME diagnosis I routinely check lying and sta...

Hi POTS involves dysregulation of the autonomic nervous system and will effect different organs not just the heart. There can be an effect on respiration /breathing control and this may be contributing to your daughter's symptoms. When I mentioned simple breathing exercises I meant slowing down brea...

I am unsure what the specific abnormalities in your son's blood tests are but for a diagnosis of CFS/ME there has to be no evidence of any other cause for the symptoms such as infection or inflammation. It sounds like your son is showing classical "boom and bust" type presentation whereby ...

From your post I am unsure whether your son is accessing any specific psychological support with his symptoms. I have certainly seen similar presentations in young people and in these cases I have sought psychological support..
Caroline Grayson

I think we are learning more about the role of vitamin D as vitamin D deficiency does appear to be associated with aches/pains. Children who are not spending time outdoors are at higher risk of deficiency and I am now checking vitamin D levels as part of my initial screening bloods and providing sup...

I think this is a really interesting area as I am certainly aware that a number of my patients appear to have significant hypermobility and CFS/ME. I also certainly have at least 1 patient who has hypermobility/CFS/ME and POTS so the diagnoses are certainly not mutually exclusive. From my experience...

I have certainly come across this before in some of my patients and it has been described as the feeling of not being able to take a full breath in. It can be associated with panic/anxiety type symptoms and if this is the case it may be helpful to look at strategies to help manage anxieties which in...

From your question I am unsure whether your daughter is under the care of a paediatric immunologist or rheumatologst? With a strong family history of autoimmune disease and joint swelling I certainly would consider a referral for a paediatric rheumatology opinion The link between CFS/ME and possible...

My child was diagnosed with CFS a few years ago but recently a paediatrician removed the diagnosis saying she has been ill for too long for it to be CFS. She (the paediatrician) said that the original diagnosis was correct but she had cured the CFS and what was left was a dissociative disease. The ...