UK: Survey: The Brain Charity: Have your say on neurological delays and misdiagnoses

[Andy]

"Our survey will help us understand how to improve the diagnosis issues people with neurological conditions face

We know that for far too many people with neurological conditions, getting a diagnosis can be a lengthy and deeply frustrating process.

That’s not good enough, and we’re determined to change it.

To do that, The Brain Charity is launching a brand new survey, to help us get a better understanding of the difficulties people are facing and to try and understand how and where improvements can be made.

Who can take the survey?
The Brain Charity’s new survey is designed for people with neurological conditions and their family members.

If you or a loved one has been through a diagnosis or has experienced a neurological condition, we want to hear from you.

How can I take the survey?
Click https://bit.ly/TBCSurvey22 "

More detail at https://www.thebraincharity.org.uk/neurological-condition-delay-misdiagnosis/

 

[Sly Saint]

The Brain Charity

hm; not keen on their CFS page (I searched using myalgic encephalomyelitis)

What is chronic fatigue syndrome?
CFS is a long-term condition, characterised by extreme tiredness.

What causes CFS?
While CFS can affect anyone, it is more common in women aged 20-40. It is not known what causes CFS, but it may be triggered by an infection.

What are the symptoms of chronic fatigue syndrome?
Symptoms of CFS can include:

• feeling extremely tired
• disturbed sleep patterns
• muscle or joint pain
• headaches
• feeling dizzy

The symptoms of CFS are similar to many other conditions. Therefore, it is important to consult your GP for a diagnosis.

Chronic fatigue syndrome - The Brain Charity

 

[Sly Saint]

hm; not keen on their CFS page (I searched using myalgic encephalomyelitis)

Chronic fatigue syndrome - The Brain Charity

this has been updated.........much,much better

Myalgic encephalomyelitis / chronic fatigue syndrome
ME/CFS, myalgic encephalopathy, post-viral fatigue syndrome (PVFS), systemic exertion intolerance disease (SEID)

What is ME /CFS?
ME /CFS is a long-term fluctuating condition that causes symptoms affecting many body systems. Key symptoms include crushing exhaustion and a severe worsening of symptoms after minimal activity.

What causes ME /CFS?
While ME /CFS can affect anyone, it is more common in women aged 20-40. It is not known what causes ME /CFS, but it may be triggered by an infection.

What are the symptoms of myalgic encephalomyelitis / chronic fatigue syndrome?
Symptoms of ME /CFS can include:

• Debilitating fatigue
• Post-exertional malaise – a reduction in function and substantial worsening of symptoms following physical or mental exertion or exercise.
• Unrefreshing /disturbed sleep
• “Brain fog”
• Feeling dizzy, nauseous or fainting upon standing or sitting up.
• Loss of thermostatic control and “heightened sensitivities” (to temperature, light, sound, touch taste and smell)

The symptoms of ME /CFS are similar to many other conditions. Therefore, it is important to consult your GP for a diagnosis.

https://www.thebraincharity.org.uk/condition/chronic-fatigue-syndrome/