When it comes to rare diseases, many doctors simply just don’t know the proper way to diagnose, monitor, and treat them. It’s difficult to know how to respond to every single condition a doctor sees, especially if they rarely see cases at all. Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME), acts as an example. That’s why the National Institute for Health and Care Excellence (NICE) has created and released guidelines surrounding CFS, its diagnosis, and its treatment.

Those came out back in October of 2021, and now NICE is releasing further instructions on how to implement these guidelines. This implementation guide was released on an important day – May 12th, which marks International ME Awareness Day. It tells us all about the guidelines themselves, along with how we can take concrete action to place them into society and the healthcare system.

Turning to the guidelines, they are a comprehensive collection of recommendations on proper detection and diagnosis, treatment, monitoring, education, support, and other information. Because CFS is so poorly understood, these guidelines alter many of the existing processes in place for this rare condition. This means that it will take work, education, and time to change the way healthcare professionals think and practice. And because there is no national system in place for CFS, it’ll be left up to local systems to implement the guidelines.

Here are some of the highlights of the implementation guide:

• Secondary care experts should be available to help primary care providers in CFS cases
• There should be heightened access to pediatric review and care for CFS
• Training and education should take place across social care and health workers so that they are knowledgeable and can use the new guidelines
• There should be more investing in specialized clinics with specialists who can properly diagnose and create care plans for CFS patients
• Funding and capacity should go under review to see where the need exists

Want to read the full implementation statement? You can find it here. The source article exists here.

About CFS

Also referred to as myalgic encephalomyelitis (ME), CFS is a rare, chronic illness that tends to impact females more than males. It is characterized by severe, inexplicable fatigue. Medical professionals do not know what causes CFS, and theories range from genetics to immune system problems to hormonal imbalances. Some doctors even dismiss CFS as a merely psychological condition. Most recently, it has been linked to COVID-19. Symptoms include:

• Issues with concentration (brain fog)
• Intense fatigue
• Low stamina
• Dizziness
• Blurred vision
• Sleep problems
• Pain in muscles and/or joints
• Headaches
• Sore throat
• Swollen lymph nodes in the neck and/or armpits
• Depression
• Bowel dysfunction

Unfortunately, there is no treatment specific to CFS. Instead, doctors aim to manage one’s symptoms. Painkillers can help to manage general pain, headaches, and muscle and joint pain. Behavioral therapy could be useful if a patient experiences depression or a mood disorder due to CFS.

Patients should refer to their doctors for help managing their specific symptoms.