I just wanted to commend this book here that I have recently read.
It may even ring some bells for someone wrongly diagnosed with ME/CFS
I did a search on PR to see if anyone else had highlighted PTHP, and I see that there is this thread following an article in the Daily Mail. Joanna was actually the person who wrote the Daily Mail article (she is not a DM journalist). http://forums.phoenixrising.me/inde...behind-30-000-cases-of-chronic-fatigue.30339/
The true story starts in the UK with the suicide of Joanna’s son and how she, with the months following, tried to understand and make sense of it. She found out from his medical records and other personal information, that he must have suffered from a medical condition that was never diagnosed – Post-traumatic Hypopituitarism, known as PTHP.
Joanna discovered although there is a relatively high risk of pituitary damage after brain injury, the symptoms of which can happen months or even years after the event, that few people are warned of the risks at the time. In the years following therefore if they then get seemingly unrelated illness, they may not tie up the things together, and it’s likely that neither will the medical experts that they see. Unfortunately also the standard testing for pituitary issues is lacking and does not pick up many cases, and the other better testing is not always done, so the patient goes away still undiagnosed.
Some of these people will be diagnosed with ME/CFS and fobbed off. Some perhaps diagnosed simply with depression as that is a factor too with PTHP. The story is familiar to us on here, but maybe not this aspect of it.
Joanna has spent years since Christopher’s death trying to highlight this gap, and ask for specialists in the field to simply point out the risks when the person gets brain injury. You would think this would be straightforward but she has been blocked at every turn, sometimes by the charities that represent the patients and sometimes by the Government agencies who are supposed to help, such as NICE. As well as a very human and moving story which is a fitting tribute to Christopher’s memory, to ensure that no one else should suffer as he did, it is also a record of what she has done over the 8 years since he died, (not entirely successfully due to the blocks that have been set up by persons unknown), to highlight a condition that can be helped, if known about.
Having read about ME advocates on this forum, Joanna seems to have achieved an amazing amount single handed. She is still trying to get the information out there. If you have had a brain injury in childhood or later in life, you may want to read this book or explore the subject of PTHP as it could be the key to understanding your own problems.
Joanna lives in the UK where she experienced extraordinary resistance and reluctance to inform and diagnose properly. I don’t know if the same is true in the U.S. or other countries. Does anyone know?
It may even ring some bells for someone wrongly diagnosed with ME/CFS
I did a search on PR to see if anyone else had highlighted PTHP, and I see that there is this thread following an article in the Daily Mail. Joanna was actually the person who wrote the Daily Mail article (she is not a DM journalist). http://forums.phoenixrising.me/inde...behind-30-000-cases-of-chronic-fatigue.30339/
The true story starts in the UK with the suicide of Joanna’s son and how she, with the months following, tried to understand and make sense of it. She found out from his medical records and other personal information, that he must have suffered from a medical condition that was never diagnosed – Post-traumatic Hypopituitarism, known as PTHP.
Joanna discovered although there is a relatively high risk of pituitary damage after brain injury, the symptoms of which can happen months or even years after the event, that few people are warned of the risks at the time. In the years following therefore if they then get seemingly unrelated illness, they may not tie up the things together, and it’s likely that neither will the medical experts that they see. Unfortunately also the standard testing for pituitary issues is lacking and does not pick up many cases, and the other better testing is not always done, so the patient goes away still undiagnosed.
Some of these people will be diagnosed with ME/CFS and fobbed off. Some perhaps diagnosed simply with depression as that is a factor too with PTHP. The story is familiar to us on here, but maybe not this aspect of it.
Joanna has spent years since Christopher’s death trying to highlight this gap, and ask for specialists in the field to simply point out the risks when the person gets brain injury. You would think this would be straightforward but she has been blocked at every turn, sometimes by the charities that represent the patients and sometimes by the Government agencies who are supposed to help, such as NICE. As well as a very human and moving story which is a fitting tribute to Christopher’s memory, to ensure that no one else should suffer as he did, it is also a record of what she has done over the 8 years since he died, (not entirely successfully due to the blocks that have been set up by persons unknown), to highlight a condition that can be helped, if known about.
Having read about ME advocates on this forum, Joanna seems to have achieved an amazing amount single handed. She is still trying to get the information out there. If you have had a brain injury in childhood or later in life, you may want to read this book or explore the subject of PTHP as it could be the key to understanding your own problems.
Joanna lives in the UK where she experienced extraordinary resistance and reluctance to inform and diagnose properly. I don’t know if the same is true in the U.S. or other countries. Does anyone know?
Last edited:
