NICE Evidence Search containing ME/CFS Symptom Management information will be removed shortly

[livinglighter]

In my attempts to help my GP help me, I came across a NICE Evidence page outrightly calling ME a physical illness with information on identifying and managing the symptoms.

https://www.evidence.nhs.uk/document?id=2193067&returnUrl=search?q=myalgic+encephalomyelitis

https://actt.albertadoctors.org/CPGs/Lists/CPGDocumentList/MECFS-CPG.pdf#search=myalgic encephalomyelitis

The information was published in 2016 which predates the new guidelines but follows the 2007 guidelines considerably.

Does anyone know if health professionals can use this resource to help inform patient care?

The evidence search function where it is located will end soon on 31/03/22, and there doesn't appear to be anything else giving instructions.

 

[Andy]

Why not just point him towards the new guidelines? https://www.nice.org.uk/guidance/ng206

There is nothing stopping him using that NICE Evidence page but the information at the link I have posted above is the most up-to-date version.

 

[livinglighter]

Why not just point him towards the new guidelines? https://www.nice.org.uk/guidance/ng206

There is nothing stopping him using that NICE Evidence page but the information at the link I have posted above is the most up-to-date version.

Good point!

I think the online document may be helpful as it has some pathology headings for managing symptoms, unlike the new guidelines, unless I've missed where it is allocated.

My doctor doesn't seem to currently know what referrals to make. Eg. if I report weight gain do I need to see an endocrinologist to check for hormone imbalance or just a dietician.


*Edited for clarity.

 

[Andy]

My doctor doesn't seem to currently know what referrals to make. Eg. if I report weight gain do I need to see an endocrinologist to check for hormone imbalance or just a dietician.

"1.12.22 Refer people with ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are:

• losing weight and at risk of malnutrition
  
  
• gaining weight
  
  
• following a restrictive diet."

https://www.nice.org.uk/guidance/ng...ions#symptom-management-for-people-with-mecfs

 

[livinglighter]

"1.12.22 Refer people with ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are:

• losing weight and at risk of malnutrition
  
  
• gaining weight
  
  
• following a restrictive diet."

https://www.nice.org.uk/guidance/ng...ions#symptom-management-for-people-with-mecfs

I am not sure if dieticians can test for possible underlying neuroendocrine hormonal imbalances causing weight gain, which I would want if it were the case. I'll discuss the matter with the GP, but going straight to a dietician may miss out on relevant testing.

 

[Saz94]

I am not sure if dieticians can test for possible underlying neuroendocrine hormonal imbalances causing weight gain, which I would want if it were the case. I'll discuss the matter with the GP, but going straight to a dietician may miss out on relevant testing.

Totally agree with you re: not just referring straight to a dietician for weight gain .

GP should be able to test your thyroid hormones themselves - weight gain can be a symptom of hypothyroidism.

I'm not sure if there are other hormones affecting weight?

 

[livinglighter]

Totally agree with you re: not just referring straight to a dietician for weight gain .

GP should be able to test your thyroid hormones themselves - weight gain can be a symptom of hypothyroidism.

I'm not sure if there are other hormones affecting weight?

There is something called Hypopituitarism.

 

[livinglighter]

Quick update!

After years of my family being perplexed by my ailing health and taking a backseat supporting approach, they are now proactive about getting me better medical. They are currently corresponding with doctors on my behalf.

For once, different doctors at my surgery are starting to sound like they are listening!

My relative also pulled up more information showing the seriousness of ME/CFS from the NICE evidence search website by just typing 'MYALGIC'

https://www.evidence.nhs.uk/search?pa=1&q=MYALGIC

We've already sent what I found earlier to my GP and will send some new things found.

I've yet to look through the information properly myself, but I wanted to share it in case you find it helpful to show your doctor before the webpage closes on the 31st of this month.

I was also sent the following article discussing links between ME/CFS and Long Covid from the Patient Info website.

https://patient.info/news-and-features/why-is-mecfs-research-key-to-understanding-long-covid#:~:text=Long COVID and ME/CFS shared symptoms&text=According to research, the most,-exertional malaise (PEM)