Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) NICE Guidance

We are currently reviewing Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) pathways for adults and children across Suffolk and North East Essex, in line with NICE guidelines, and we would value your thoughts and suggestions in this forum. You are invited to share your experiences, ideas, and suggestions for improvement.

This is a much-needed pathway and should have been done many years ago, as most of the professionals in the service think this it is a mental health condition, that will get better over time if the patient is determined to push into recovery. This idea has caused catastrophic life changing events, which needs to be recognised and to stop. This is my experience of pushing into disability from fatigue into ME. 

Very young children are traumatised the worst, as they see their families hauled in by schools, doctors’ surgeries and blamed for their physical disease.  Exam boards who have to have full health reports to support students, this cannot happen if doctors dismiss ME and lack the understanding through training. 

The intro here is spot on, with the complexity and impacts on the body. Implementation of this pathway will enable understanding, leading to treatments and research that will enable GPs, and a service lead consultant that will support, include and treat the patient and not bend to political agenda of the past. That political agenda that has caused such discrimination, segregation, trauma, and suffering. Will Suffolk and Northeast Essex be the trailblazers that will go down in history as the turning point?

My fear, as always, is that coproduction will be sidelined, and the lived experience boxed up and put silently away as they have over decades, with the ME community once again being left to suffer with ignorance and poor quality or no life. 

The evidence of trauma and mistreatment is in documentaries, books, spoken at parliament, reviews of SEND, Family Courts and the care system and sadly, in autopsy reports on such young people that have had to fight for the right of an autopsy. This trauma is shared in the ME community and is my experience when reading the research papers and the files held by the DWP and dealing with services as a carer. 

Chronic Fatigue is not the same as ME. You can have fatigue from a virus, infection or surgery and recover. ME is exhaustion at a cellular level and if this was understood, and data collected from fatigue to ME, then time, money and resources could be saved. If fatigued is noticed and supported by the right rest and activity “staying within your energy envelope” in the first place, then perhaps the damage of ME would never occur. My experience is that due to the way bias opinion and denying the physical disease of ME has caused such devastation that is inhuman and of which, science has proven so. 

Remember those with ME are unable to engage as you would expect others, so when asking for feedback there needs to be that understanding. You also have to consider why would anyone engage with those that have caused so much suffering, trauma, and neglect? This has been my experience as an advocate. 

One doctor who had come down with Long Covid said to me “We were never told and if we are not told we just don’t know that pushing the patient causes such devastation”. We have to give them the knowledge, it is our collective responsibility to give the right information and training, you can’t do that, if you do not understand what it is to live with the trauma of ME.   

 The ICB has to stop the inequality, honor the due process and support the ME community.