Article BBC: Endometriosis: How new treatment 'changed my life' 2021

[Sly Saint]

"
Taking the dog for a walk is a routine task for most people. But Jessica Rafferty would often have to cut outings short due to crippling pain.

She, like one in 10 women, lives with endometriosis - a condition where tissue similar to the lining of the womb grows elsewhere inside the body. It can be incredibly painful, and can take years to diagnose.

And there is no known cure.

But Jessica is part of the search for effective treatments. She is among 30 women taking part in the University of Edinburgh study looking at dichloroacetate, a drug currently used to treat rare metabolic conditions in children.

It helps to control lactate levels, which have been found to be higher in patients with some cancers and endometriosis."

https://www.bbc.co.uk/news/health-56245521

 

[InitialConditions]

I don't know if this is coincidence, but this thread from this morning is a personal experience of using sodium dichloroacetate for ME. https://s4me.info/threads/my-treatment-with-sodium-dichloroacetate.19505/

 

[Sly Saint]

New drug could be world-first to treat ‘insurmountable pain’ of endometriosis

Scientists have launched a clinical trial to assess a potential new treatment for endometriosis – the first in four decades.

Researchers from the universities of Edinburgh, Aberdeen and Birmingham plan to see whether the drug, dichloroacetate, can help manage pain among those with the condition.

If successful, the drug could be the first ever non-hormonal and non-surgical treatment for endometriosis – and the first new treatment in 40 years.

New drug could be world-first to treat ‘insurmountable pain’ of endometriosis (msn.com)

 

[Hutan]

From the article:

Maree Todd, women’s health minister for Scotland, said: “Scotland is the first country in the UK to introduce a Women’s Health Plan, with endometriosis being one of its early priorities.

“The plan includes several actions to help improve care and support for those with endometriosis, including a vital action to invest in further research to develop much-needed improvements into treatment and management options for the condition.

Good news for women with endometriosis. I wonder if there is room for ME/CFS research funding in the Scottish Women's Health Plan.

 

[Jonathan Edwards]

I hope they have done the trial properly.

 

[CRG]

Good news for women with endometriosis. I wonder if there is room for ME/CFS research funding in the Scottish Women's Health Plan.

Doesn't look like it would fit the Plan priorities: https://www.gov.scot/publications/womens-health-plan/pages/8/

• ensure women who need it have access to specialist menopause services for advice and support on the diagnosis and management of menopause;
• improve access for women to appropriate support, speedy diagnosis and best treatment for endometriosis;
• improve access to information for girls and women on menstrual health and management options;
• improve access to abortion and contraception services;
• ensure rapid and easily accessible postnatal contraception; and
• reduce inequalities in health outcomes for women's general health, including work on cardiac disease.

The charity partner is interesting: Wellbeing Of Women

"Wellbeing of Women is the charity dedicated to improving the health of women and babies to make a difference to everybody's lives today and tomorrow. * We provide information to raise awareness of health issues to keep women and babies well today. * We fund medical research and training grants, which have and will continue to develop better treatments and outcomes for tomorrow." Though their grant making history is heavily obstetrics focused.

 

[Hutan]

reduce inequalities in health outcomes for women's general health, including work on cardiac disease.

it's arguable that research into ME/CFS would reduce inequalities of health outcomes for teenage girls and women of working age.

 

[Andy]

Wellbeing of Women say "From period problems and starting a family, to menopause and gynaecological cancers, we are here for women’s gynaecological and reproductive health." on their website, https://www.wellbeingofwomen.org.uk/about-us/, so presumably ME/CFS wouldn't necessarily fit with that.