UK: NHS website: Myalgic encephalomyelitis, chronic fatigue syndrome ME/CFS

Sly Saint · Aug 13, 2023

best NHS site is the NHS Scotland site
https://www.nhsinform.scot/illnesse...lomyelitis-me-or-chronic-fatigue-syndrome-cfs

Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)
Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long term (chronic) neurological condition that affects the nervous and immune systems.

People with ME/CFS experience severe pain and fatigue associated with post-exertional malaise (PEM). This is when the body is not able to recover after using even small amounts of energy. This fatigue feels very different from ordinary tiredness. It might take a day or 2 to kick in after physical, mental, or emotional exertion.

ME/CFS affects more women than men, can affect children and adults of all ages and from all social and ethnic groups. It doesn't go away with sleep or rest and affects everyday life. It can sometimes be diagnosed as post viral fatigue syndrome (PVFS).

Symptoms of ME/CFS
The symptoms of the condition vary from person to person. There may be times when your symptoms improve and you'll be able to do some normal everyday activities. At other times, symptoms may get worse, affecting your daily life.

If you experience new symptoms, talk to your GP or specialist as the new symptoms may be unrelated to ME/CFS. Women often find that symptoms worsen at different times in their menstrual cycle. Not everyone will experience all of the symptoms.

Post-exertional malaise
People with ME/CFS experience severe pain, fatigue and a range of other symptoms associated with PEM. This is the body and brain’s inability to recover after using even small amounts of energy.

Simple physical or mental activities, or combinations of activities, can leave people with ME/CFS feeling completely exhausted. It can also lead to an increase in other symptoms.

Other symptoms of ME/CFS include:

feeling generally unwell

pain

broken sleep

problems with concentration, thinking and memory (‘brain fog’)

speech and language problems, including word-finding difficulties

poor temperature control

dizziness

being very sensitive to light and sound

nausea

loss of appetite

muscle pain (myalgia)

For more information on the symptoms of ME/CFS visit the Action for M.E. website.

Frustration, anxiety, low mood and depression are sometimes experienced by people with ME/CFS because of the impact of the condition and its symptoms on their lives. This does not mean that ME/CFS is a mental health condition.

Causes of ME/CFS
Further research is needed to confirm what causes ME/CFS. There might be various factors involved and there may be a number of different types of the illness. These different sub-groups still need more research to be identified, including how they lead to different experiences of the condition and how it develops.

ME/CFS may appear suddenly or more slowly over time. It may follow an infection, typically, but not always, viral.

Other possible triggers can be:

trauma

surgery

stressful major life events

In some cases, there may be no identifiable trigger.

How is ME/CFS diagnosed?
There's no single test to detect ME/CFS. A diagnosis is made after other possible known causes for symptoms have been excluded.

The earlier the illness is recognised, the sooner you can get help to manage your symptoms. Many people with ME/CFS find it helps to keep a diary of their symptoms so that they can take this to their GP or specialist.

Your GP will usually:

do a physical and mental examination to rule out other conditions

ask about recent travel, tick or insect bites, unusual infections, and drug and alcohol use

review current medication

arrange tests

They may be able to make a diagnosis after 3 or 4 months of seeing a pattern of symptoms. Anyone suspected of having ME/CFS should be considered for routine blood tests to identify other possible illnesses. More investigation may be needed if the diagnosis remains in doubt.

Some people with ME/CFS also have another long-term condition and it's important that you talk to your GP about how to manage the symptoms of the 2 conditions.

Treating ME/CFS
Although there's no cure for ME/CFS, there are ways to help manage your symptoms.

Because of the complexity of the illness different things work for different people. Your GP may be able to support you through managing your individual symptoms.

To decide what treatment is right for you, you should look at the evidence, including published research and patient surveys. Make sure you fully understand what the treatment involves before you make a decision. You have the right to decline any treatment option you do not feel comfortable with.
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https://www.nhsinform.scot/illnesse...lomyelitis-me-or-chronic-fatigue-syndrome-cfs

do not use the NHS England site, the information is not up to date and not properly in line with the NICE guidelines.

NICE guideline [NG206] Published: 29 October 2021

https://www.nice.org.uk/guidance/ng206

Ariel · Aug 12, 2023

Is there any hope of eg the charities flagging this issue in their materials to put pressure on NHS England to change the website before whenever it was supposed to be in 2024 that they are making a change?

Hutan · Aug 13, 2023

Ariel said: ↑

Is there any hope of eg the charities flagging this issue in their materials to put pressure on NHS England to change the website before whenever it was supposed to be in 2024 that they are making a change?
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Follow the link to the discussion thread below to comment on the NHS's update plan for its ME/CFS webpages:
4. UK 2023 Interim Delivery Plan on ME/CFS consultation: Agreed Actions

Adrian · Aug 16, 2023

Ariel said: ↑

Is there any hope of eg the charities flagging this issue in their materials to put pressure on NHS England to change the website before whenever it was supposed to be in 2024 that they are making a change?
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I think the Charities are flagging issues with various material and services provided by clinics. It something Charles Shepard has talked about doing at FME meetings. Not sure about this particular website though.

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UK: NHS website: Myalgic encephalomyelitis, chronic fatigue syndrome ME/CFS

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UK: NHS website: Myalgic encephalomyelitis, chronic fatigue syndrome ME/CFS

Sly Saint Senior Member (Voting Rights)

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Hutan Moderator Staff Member

Adrian Administrator Staff Member

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