climbing-up-mountain-with-helping-hand-sm

Newly diagnosed ?

“The climb may be hard but you’ll see things that you never could have seen in the valley…”

And you don’t have to go it alone….

Positive Facts:

Many people with ME or CFS improve in time especially if they manage the illness well.
Deeper friendships are often formed through mutual support.
Creative talents are be discovered or developed.
It can increase depth of character.
It can improves time management and pacing skills which are useful for all of live.
Teaches people to make the most of what they have.
People with ME/CFS can be an inspiration to healthy people. They are often very courageous and learn great perseverace and determination.

Properly diagnosed?

Currently there aren’t any widely available laboratory tests for assisting the diagnosis of ME or CFS which means that a diagnosis can not be 100% certain. However, if a physician has excluded other possible causes of symptoms then it increases the likelihood of an accurate diagnosis. There are different criteria for diagnosing ME and CFS. The ‘international consensus criteria’ is favored by many ME/CFS specialists. More simplistic criteria are sometimes used, especially with diagnosing CFS as broader group, rather than more specific groups. The NHS Norfolk and Suffolk ME/CFS service will be reasonably qualified to make the diagnosis although some GPs will know enough about the condition to make it.

The NHS Norfolk ME/CFS Service ME and CFS definitions Support Guides

Coming to terms with a diagnosis

Coming to terms with a diagnosis of ME or CFS can be a difficult and sometimes scary experience. This can sometimes be compounded by hearing other people’s stories but it is important to remember that the illness varies tremendously and some people recover, or see a major improvement, relatively quickly. I personally know a few people who have made full recoveries, and others who have improved to the point of being able to have a reasonable lifestyle.There’s also an increasing amount of research going on and real hope of treatments being effective treatments being developed. Even so it can be a major shock to the system and cause a lot of difficulties so it may be something that you need to talk though with family or close friends or even a counsellor. Sometimes family and friends can find it hard coming to terms with it and may be in denial or just not understand what it is. That’s where talking to other people with the condition may be easier.

Guides

Elevate's general tips for living with ME or CFS in Norfolk.

A Suggested Action Plan

1. Confirm diagnosis.

[spoiler title=’See detail’ collapse_link=’true’] GPs may give a diagnosis of ME/CFS and should certainly do their best to exclude other possible causes of your symptoms. Sometimes Norfolk’s NHS ME/CFS specialist service will have more expertise with diagnosing the illness although this will likely be in collaboration with your GP’s investigations.[/spoiler]

2. Get in touch with Norfolk’s NHS ME/CFS specialist service.

Even with a diagnosis from a GP the specialist service is likely to give you more expert advice.

3. Learn about the illness and how to manage it well.

[spoiler title=’Read more’ collapse_link=’true’]

There are three mains ways to do this:

Norfolk’s NHS ME/CFS service.
Info from reputable sources e.g. The ME Association, books, videos e.g. try these well produced videos (click here.)
Through this website’s pages about ME and CFS, and research.
Through Elevate’s tips forliving with ME or CFS in Norfolk which available as a PDF which you can print out and find at the monthly meetings.
Other guides.

Remember that info on the internet is only as good as it’s source. The ME Association has a well respected medical advisor and ME/CFS specialist author. It produces both free and paid for information.

[/spoiler]

4. Optimal management for best quality of life and highest chance of recovery.

[spoiler title=’Read more’ collapse_link=’true’]

It is hoped that with better education about how to the manage the illness the outcomes will on average improve. There is certainly plenty of evidence that management techniques such as pacing, balanced lifestyle, relaxation techniques, creative & recreational occupational therapy, diet etc can make significant differences to at least symptoms, if not recovery. The NHS ME service in Norfolk can give you some good tips on this although there may be long waiting lists or limited availability of this input. There are also some tips in our own guide to living with ME or CFS in Norfolk.

[/spoiler]

5. Learn about other sources of help.

Benefits, and advice and support with claims and appeals.
ME/CFS support groups in Norfolk and national groups.
Disability groups and organisations.

6. Apply the above knowlege.

Managing ME and CFS well, and seeking help from various sources can take a lot of time, energy and patience. It can sometimes seem overwhelming if you are new to it all so it may help to write out your own action plan with a rough order of priorities. Managing the illness to the best of your ability should be a high priority because the sooner you do the more likely you are to recover and may do so with greater speed; but don’t forget to try to include pleasure into your lifestyle. There is far more detail on in ‘Elevate’s tips for living with ME or CFS in Norfolk.