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Post Viral Fatigue Syndrome /ME/CFS ...

Neglected & Misunderstood?

Many Post Viral Fatigue Syndrome /ME/CFS sufferers feel that they’re fighting two battles:

One is fighting the illness itself. The other is fighting to prove that what they are suffering from is real.

Sadly, many Post Viral Fatigue Syndrome /ME/CFS sufferers feel that they are being both neglected and misunderstood...

 

Unlike many other chronic illnesses, many Post Viral Fatigue Syndrome /ME/CFS sufferers have to also fight the battle against outright disbelief. There seems to be a constant fight to prove that what they are suffering from is real!

To read about the evidence and facts that prove that Post Viral Fatigue Syndrome / ME/ Chronic Fatigue Syndrome is real, click here!

 

"Because of illusions that CFIDS [CFS/ME] is simply a disease of tired people... the public has been largely deprived of accurate information."

-- ibid, as cited in 'Shattered' by Dr Lynne Michell, p4 --

"It is noteworthy that, although high scores were consistently achieved for all patients’ requirements in the highest priority category, (1), the highest scoring patients’ requirement was “Sympathetic Treatment / Acceptance of Condition”.

This may seem like a surprisingly basic requirement but, for this particular group of patients, it scored even more highly than medical tests and management of their condition.

Its priority is explained in accompanying notes, where many mentioned previous poor treatment and inappropriate attitudes towards their illness from healthcare staff, which not only increased stress but often made their ME worse."

-- 25% ME Group, Severely Affected ME Analysis Report [ref 28], (referring to Hospital Referrals & Treatments) --

 

If you are suffering from Post Viral Fatigue Syndrome, M.E., or Chronic Fatigue Syndrome then don't forget to grab your free copy of the Sleepydust Ezine here...

"People with ME are very ill and very heroic.

They face a medical profession and a society which reflect back to them a skewed and inaccurate perception of their suffering.

ME is a serious, organic illness, yet sometimes it seems that those who suffer from it are the only ones who know that."

-- Dr Lynne Michell, 'Shattered', pXVII --

Inadequate Care & Support

The 25% Group ran a survey in 2004 [ref 28]. Its results painted a stark picture of the lives of severely affected ME sufferers, and the sheer neglect that was occurring:

"We are very aware that people with severe Myalgic Encephalomyelitis (ME) - that is people who are house, wheelchair and bed-bound by this neurological condition - often do not receive the appropriate support services they require. Services needed include medical and social care, as well as practical and financial assistance. Without appropriate services, patients’ health and well-being can be seriously compromised." [p1]

"Of those who had had a community care assessment, 61% felt that their care package was inadequate." [p3]

-- 25% ME Group, Severely Affected ME (Myalgic Encephalomyelitis) Analysis Report On Questionnaire Issued January 2004 --

When the survey respondents were asked if they could even go see their doctors:

"58% stated that they were completely unable to attend their GP’s surgery and, of the 42% who were able to attend, the vast majority (over 80%) were completely reliant upon carers, friends or family members to transport them to and from the surgery. Of this number, most felt obliged to attend the surgery because their GP would not carry out home visits for ME related matters."

-- 25% ME Group, Severely Affected ME Analysis Report [ref 28], p5 --

Suicide - The Stark Reality

A growing number of Post Viral Fatigue Syndrome / CFS/ME sufferers commit suicide because of the lack of support and belief out there.

In fact, in a report by Action For ME, it was revealed that a staggering 51% of survey respondents (ME/CFS sufferers) have felt suicidal as a result of their illness. Those with the most severe cases of the illness and who received delayed diagnosis and management were most likely to have considered suicide [ref 27].

If you are feeling suicidal, click here for more information ...

The Importance Of Support...

Many sufferers feel completely abandoned and isolated due to the social stigma and misunderstanding surrounding Post Viral Fatigue Syndrome / ME / CFS.

So if YOU are a friend or relative of a Post Viral Fatigue Syndrome / CFS/ME sufferer, please, please take the time to get to know the illness and what it involves.

It really will mean a lot to your friend or relative…

... that crucial support and belief in the illness is sometimes so very hard to come by.

If you'd like to learn more about this illness, feel free to watch our free video for friends and family of PVFS / ME / Chronic Fatigue Syndrome sufferers here...

 

"Having someone who truly understands and sympathises can make a world of difference. Relatives and friends can offer lifelines or they can turn their backs.

(...) Many people report that only a few loyal friends and relatives stick by them. Being ill is a lonely business."

-- Dr Lynne Michell, 'Shattered', pXXIV --

 

These people really need your support. A phone call, a card, an offer to take them to the doctors, or to do their shopping. Every little helps.

"The support I got from my family was crucial.

I had to appeal against being turned down for Incapacity Benefit, and then for Disability Living Allowance.

I was ready to give up. It felt like I was fighting a losing battle. But my mum kept me going. She even represented me at my appeal because I was too weak and ill to go.

I really don’t know what I would have done without her support."

-- Elaine, Cornwall, ME/CFS sufferer --

Does Your Friend Or Relative Need Your Help?

In the 25% Group's Analysis Report [ref 28], the survey respondents were asked about their basic homecare requirements.

  • 44% said they needed help with personal care
  • 74% said they needed help with the preparation of meals or needed help with shopping
  • 76% said they needed help with domestic care
  • 43% said they needed a Social Needs service

Washing your hair, doing the dishes, preparing a meal, popping to the local shop for some bread... these are things that you wouldn't think twice about doing, right?

But these are the types of things that a very severely affected Post Viral Fatigue Syndrome / ME/CFS sufferer struggles to do, or can't do at all. These are the types of things they need help with.

So if you're a friend or relative, please don't be scared to ask if they need help. Please don't be scared to ask if they'd like you to do their shopping this week. It might not mean much to you, but to a severely affected Post Viral Fatigue Syndrome /ME/CFS sufferer...

...it might make all the difference in the world.

Watch our free video for friends and family of PVFS / ME / Chronic Fatigue Syndrome sufferers here...

Do You Want A Better Understanding Of What It's Like To Have Post Viral Fatigue Syndrome /ME/CFS?

If you'd like a better understanding of this illness, then please do check out our short awareness video here...

Also, you can sign up for the free popular Sleepydust Emagazine here...

POST VIRAL FATIGUE SYNDROME , CFS/ME If you want a better understanding of the lives of Post Viral Fatigue Syndrome / ME/CFS sufferers, I recommend Lynn Michell's book Shattered; Life With M.E.

Also, why not take a look at the page titled Imagine Having PVFS/ME/CFS? That will give you a 'glimpse' of what it can be like for sufferers. Click here...

You can also check out the online diaries of the various ME/CFS sufferers listed in our Sleepydust Blog Directory here!

Bottom line?

If you have a friend or a relative who suffers from Post Viral Fatigue Syndrome /ME/CFS, please don't forget about them. They are still there. The likelihood is that they now need you more than ever.

Their 'strange' sleeping hours may well prevent you from getting in touch with them easily. And when they are up, they may not feel well enough to talk, even on the phone. It all depends on how severe your friend or relative's illness is.

But that's why so many of these sufferers are all too easily forgotten. People give up. They stop trying.

But you can text them, you can email them, you can even pop a note through their letterbox.

Just let them know you're there. Let them know.

 

Category: Post Viral Fatigue Syndrome , ME/CFS : Neglected & Misunderstood? Needing Support.

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