Today is Severe ME/CFS Awareness Day. The date was set in 2013 by the 25% ME Group in recognition of Sophia Mirza who died in 2005 from severe ME/CFS from medical disbelief and mistreatment. She was 32 years old. The day continues to honour those who are severely affected by ME/ CFS and are house or bedridden pushing for better research and care. My daughter is one of those thousands who suffers at the severest end.
Living with severe ME/CFS is not some minor flu like fatigue that you just need to "try and push your way through ". Indeed this only makes your suffering worse and the condition deteriorate further. It means being fully bedridden for months to years in a semi death like state. My daughter has been ill since May 2025 and bedridden since November 2025. She had been due to take up her place at university and enjoy all that university brings. Sadly now her life has been reduced to lying in a darkened, silent room due to severe light and sound sensitivities away from family and friends with little contact other than for care needs. This is happening to 25% of the over 400,000 suffering at the severest level of ME/CFS right now. Also many of the 2 million long covid sufferers would also reach the threshold of an ME/CFS diagnosis and be suffering at this level too.
Whilst all this suffering is happening successive governments have chosen to ignore them providing no money for research and no care pathway or health and social care staff education. There are still no commissioned services anywhere in the UK for severe ME/CFS. For many there are no services even for mild to moderate severity either and if there is there is often a long waiting list. The small teams now care for those suffering mild to moderate long covid with no additional funding. The medical profession has largely chosen to ignore it too creating the narrative that it is a mental health issue and not a physical one, in some instances with fatal consequences. But still this narrative continues. We are lucky to have the most wonderful General Practitioner without whom we would be completely invisible and without support. Many are not so lucky. Sadly nurses and allied professionals tend to follow the medical lead and formulate a similar narrative. Of course there are some who will advocate but due to professional risk it is difficult and many would not feel comfortable. How can this have happened or be allowed to continue a day longer! Let this be the day change begins.
The UK government has attempted to address the issue in their NHS Delivery 3-year Plan by research, living with ME/CFS and attitudes and education. This is welcome news but it is not enough and will make no difference to those suffering at the severest end. There needs to be a comprehensive research strategy with meaningful funding to turbo charge the quest for answers and change the plight of hundreds of thousands of people. When a treatment is finally discovered funding will need to follow so these people who have waited so long to be heard have no delay in receiving the treatment and care they so richly deserve.
Please keep signing and sharing this petition showing the care you have and giving those who have been silenced for so long a voice and the real possibility of hope.
A heartfelt thanks to each and everyone of you who has signed this petition so far.