Fenomonal Fibromyalgia Forms

IMG_0023

This is what my lounge room looks like at the moment (and has all week!)

Currently, I am making a claim against my Superannuation insurance and the amount of information they want is phenomenal – hence all the paper all over my lounge room (you can hardly see my laptop!)

They asked for all the basic stuff (which doctors have you seen, when was your first visit, when was your last visit, etc) My GP was fabulous by giving me my whole medical record on a disc, so I was able to give them 13 pages of treatments that I’ve tried and the dates – this had to include medications, supplements, alternative therapies, etc)

Finally, after a week of working on this form (and a lot of brain frazzle), I got to the last question: Please state in your own words how this disability is affecting you and/or make any further comments in relation to this claim.

This is my response:

Although, medically, I also suffer from depression, hyperthyroidism and morbid obesity, these conditions have no functional impact on my ability to obtain and retain employment. My claim is for my loss of functional capacity due to Fibromyalgia and its associated symptoms.

Currently there is no cure for Fibromyalgia, just management.

Despite reasonable treatment, I have been told by my doctors that any further reasonable treatment is unlikely to result in significant functional improvement.

I experience frequent (more than daily) periods of fatigue when performing day-to-day activities around my home and community. Ordinarily, I am able to walk to my local shops however, often I need to organise for some-one to pick me up for my return home. It is unsafe (and painful) for me to drive any considerable distance. I have slowed movements and reaction times, so I am very hesitant to drive my car. Also, my mind tends to wander (often in the middle of a conversation) so I believe I would be a danger to other drivers.

I am able to walk around a supermarket or shopping centre slowly for short periods (and I have recently been issued a Disabled Driver Permit so I can park closer to these places). I am regularly too fatigued to prepare my own meals or vacuum my house (I only have a 2 bedroom unit but I require Home Care services from the Glen Eira City Council). I do not shower regularly as getting in the shower, washing myself, getting dry then getting dressed often means I need to rest afterwards.

I can manage most daily activities requiring the use of my hands and arms, but I have difficulty picking up heavier objects (especially if the shape of the object is awkward), handling very small objects (eg: getting money or cards from my wallet), or doing any activity that requires strength (eg: cutting up watermelon or opening a jar).

My hands and arms ache if I need to drive my own car and I often experience numbness or tingling in my fingers. I describe the feeling as ‘carbonated blood’ – it feels like my insides are fizzy. My hands feel like they’re not attached to my arms – they feel both too heavy and very light at the same time. I regularly have severe throbbing in my wrists and up my arms.

I find it extremely difficult to move after sitting for longer than 15 minutes, although it is exceedingly uncomfortable to sit in one position for any period of time. I need to move and stretch a lot to remain comfortable. Climbing or descending stairs causes shooting pains in my ankles and lower legs. My ankles and feet feel swollen (despite no visible swelling) and numb. The bones in my feet feel like they have moved while I was sitting down; when I stand up, they hurt and feel like they’re moving (painfully) back into place.

I have a heightened sensitivity to light and sound. I cannot attend live theatre or movies due to a sensory overload. Telephone calls must not be too long. Family dinners (and the associated noise and children) regularly result in severe headaches. I am extremely susceptible to outside stimuli (eg: I have to ask my mother to turn off the radio when I travel in her car). Too much surrounding conversation or activity causes my brain to shut down – I find that I can no longer think and I need to find a quiet place. When it is really bad, I hide inside my house with the blinds closed and candles burning for light.

I experience ‘Fibro Fog’[1] in waves. I can physically feel when my mind starts to lose clarity. My long-term memory is fine but I have difficulty recalling events and activities of more recent times (I hate it when my mother tells me that we’ve spoken about something when we haven’t then she says we have and that I can’t remember because my brain’s not working properly). I require lists to remember even one item at the supermarket or activities that I need to do – I have gone to the supermarket before when, in fact, I was supposed to go a doctor’s appointment.

I am easily distracted and have significant difficulty focusing on a task if there are other activities occurring nearby (I look at the remote control – lots of buttons – what did I want to do with that? Why did I pick up the remote control? Oh yeah, delete – which button is that?). My levels of concentration have diminished greatly and I find myself forgetting what I was doing, or what I need to do, to finish a task. When this happens, I have to stop myself from getting anxious and stressed, take a breath and a step backwards and try to talk myself through it.

I often forget to complete regular tasks (eg: putting the bin out on rubbish night, picking up a loaf of bread). I can’t remember if I’ve already done things (eg: send an email or pay bills) earlier in the day. I realise that these are things that people may normally forget sometimes but I do it ALL the time.

I have difficulty in prioritising and need to think carefully about the order I put things on the lists. I find making a decision quite difficult and stressful. To avoid the situation, I tend to keep to regular habits (eg: specific takeaway meals on specific days). I try not to put anything important away as I frequently misplace things.

My head feels too heavy for my neck and shoulders. I have a dull ache permanently in my head and neck – even when I don’t have a ‘headache’.

Most worrying to me is my loss of words. I can’t find the words in my brain anymore. (This is most disturbing to me as I recently completed by Bachelor of Laws with Honours, so normally my brain is extremely organised).

The symptoms of Fibromyalgia are neither constant nor consistent. They can range from very mild to severe; and it can all happen within one day. They may come and go at different times and this is where my fundamental problem with employment lies. I have good days and bad days however I never know when these will occur. There is no consistency, although there appears to be more bad days than good.

As such, despite being able to work on my good days/hours, I am unable to provide an employer with any scheduled work days/times. My current employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night) however none of these options have worked reliably. I cannot envisage how I can maintain employment alongside this restrictive condition.

I also added some fact sheets from Arthritis Victoria, Dr Yen and Fibromyalgia Network.

So, do you think I covered most of it? 



[1]          Fibro fog is a term given to the variety of cognitive problems that many fibromyalgia sufferers face during their illness. Fibro fog encompasses memory loss, difficulties using language, and difficulties with learning. These symptoms tend to descend in a haze or “fog,” around the sufferer (http://www.fibromyalgia-symptoms.org/fibromyalgia_fibrofog.html as at 23 February 2013).

Caring for Your Carer

If we are lucky, we have friends, family and/or partners to help and support us – but do you let them know how much you appreciate them? Love them? Couldn’t live without them? These are our care-givers. (In case you didn’t know, I love you, Mommy! I appreciate you and I can’t live without you!)

Thank You!

I really appreciate you,
Your helpful, giving ways,
And how your generous heart
Your unselfishness displays.

I thank you for your kindness,
I will not soon forget;
You’re one of the nicest people
I have ever met.

Carers provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or who are frail & aged. There are currently over 2.6 million unpaid family carers in Australia, more than 770,000 of whom are primary carers – the people who provide the most care (Australian Bureau of Statistics (2009) Survey of Disability, Ageing and Carers).

You Didn’t Have To

Thank you for what you did;
You didn’t have to do it.
I’m glad someone like you
Could help me to get through it.

I’ll always think of you
With a glad and grateful heart;
You are very special;
I knew it from the start!

On average carers spend approximately 40 hours per week providing care.  It is estimated that carers of someone with a mental illness spend on average 104 hours per week in the caring role (Mental Health Council of Australia and Carers Australia (2000) Carers of People with Mental Illness).

Help and Caring

Thanks for doing what you did;
You are kind beyond belief;
Your help and caring calmed me down,
And gave me soothing relief.

Carers often experience reduced physical, mental and emotional health once their caring commences.  Over time the effects of caring may intensify. It is also important for the carers to look after themselves. Carers also need to manage stress, eat well and exercise.

It Doesn’t Seem Enough

I want to tell you “Thank you,”
But it doesn’t seem enough.
Words don’t seem sufficient–
“Blah, blah” and all that stuff.

Please know I have deep feelings
About your generous act.
I really appreciate you;
You’re special, and that’s a fact!

Caring can be physically and emotionally exhausting. Regular breaks from caring can help relieve their stress and exhaustion.

For All You Do

Thank you so much for all you do;
You’re truly a delight;
When my life overwhelms and does me in,
You make everything all right.

The people who care for us often have no choice about their roles. The constant demands of caring and the many changes in family life may bring about a range of feelings and emotions. Some people may feel a sense of satisfaction about being a carer. Others may feel angry and overwhelmed at times. These emotions can be difficult to cope with.

Priorities

Thank you…
for thinking of me
and then wondering
how you could help.
Thank you…
for doing what you did,
instead of being too busy,
or just forgetting about it.
Thank you…
For inking me
on your priority to-do list,
when you have
so many other things to do;
I am honored;
It meant a lot to me.
Thank you.

Maybe it’s time to celebrate and acknowledge the vital role carers play in our lives. Maybe it’s time to say Thank You, I Love You, You’re Fantastic?

 You Made My Day

I appreciate your kindness
More than words can say;
The very nice thing you did for me
Really made my day!

You could drop over with a fruit platter, cake or a bunch of flowers, just to say hello and acknowledge the great job they are doing. You could write a short note of appreciation and leave it in their letter box. You could give them a voucher for a massage or one from a retail outlet like a book shop.

There are so many ways you can say ‘thanks’ to a carer you know or know of.

Poetry by Joanne Kuchs

(Not) Just Kidding!

Medical evidence reports that juvenile FM affects 2% to 7% of school age children. Similar to adult cases, the juvenile form of the disorder primarily strikes females. Previous studies have shown that juvenile fibromyalgia patients are burdened with substantial physical, school, social and emotional impairments. However, studies for the treatment of the juvenile form have been limited.

A recent trial shows cognitive-behavioral therapy (CBT) reduces functional disability and depressive symptoms in adolescents with FM. The psychological intervention was found to be safe and effective, and proved to be superior to disease management education.

CBT is a form of talk therapy that helps people identify and develop skills to change negative thoughts and behaviours. CBT says that individuals — not outside situations and events — create their own experiences, pain included. And by changing their negative thoughts and behaviours, people can change their awareness of pain and develop better coping skills, even if the actual level of pain stays the same.

This trial, led by Dr. Susmita Kashikar-Zuck from the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center in Ohio, investigators recruited 114 adolescents between 11 – 18 years of age who were diagnosed with juvenile FM. The trial was conducted at four paediatric rheumatology centres, with participants randomized to cognitive-behavioral therapy or fibromyalgia education, receiving eight weekly individual therapy sessions and two additional sessions in the six months following the end of active therapy.

Both groups displayed significant reduction in functional disability, pain, and depressive symptoms at the end of the trial; however, participants in the cognitive-behavioural therapy group reported a significantly greater reduction in functional disability compared to those receiving fibromyalgia education.

“Our trial confirms that cognitive-behavioural therapy is a safe and effective treatment for reducing functional disability and depression in patients with juvenile fibromyalgia,” concludes Dr. Kashikar-Zuck. “When added to standard medical care, cognitive-behavioural therapy helps to improve daily functioning and overall wellbeing for adolescents with fibromyalgia.”

 

A Sense of Security

So, I was able to offer some information to Australian FM sufferers when applying for the Disability Support Pension. Since then, I found a site which may offer help to those in the States (although it is not FM specific).

This information may help you in filing a claim for either Social Security Disability (SSD or DIB) or SSI, including applying for disability and filing the necessary appeals at various stages of the process. Applying for disability can be a difficult and drawn out process, but the odds of winning can be improved by learning about the process.

  1. How to improve your chances when applying for disability benefits
  2. How to file for disability online
  3. How to get doctors to assist your SSD or SSI claim for benefits
  4. How to assess why you were denied disability benefits
  5. How to start an appeal for Social Security disability
  6. How to request the first appeal for your Social Security Disability or SSI case
  7. How to file a request for a Social Security Disability or SSI hearing before a judge
  8. How to find an attorney representative for your Social Security Disability or SSI disability claim
  9. How to get a disability hearing scheduled faster
  10. How to present yourself before a Social Security Disability judge

I hope this is helpful for some of you.

 

 

Just say NO!

It seems to me that the government departments that deal with disability payments (from all different countries) have a policy to just reject all claims (like the insurance company in The Rainmaker).

I know that every time I have applied for anything from Centrelink (the Australian version), I have been rejected; and each time, I have either had to appeal or follow-up with many, many phone calls. But each time, I have received (finally) what I was supposed to receive.

So, today’s post is going to try to make it easier for Aussie FM sufferers to get the Disability Support Pension. (If you are from another country and can write a post that will help others from your country, I am happy to publish it)

DISABILITY SUPPORT INFORMATION

 *** Please note – I am a first year lawyer, therefore I have not had much experience with the Social Security Act 1991. However, I successfully appealed the rejection of my Disability Support Pension application.

I have put this together, hoping it will help others in the same predicament.

Basically, this is how it works:

You apply for Disability Support Pension
You must have a total impairment rating of 20 points or more under the Impairment Tables.
To get a rating you must have a permanent condition that is more likely than not to persist for more than 2 years.
You receive Disability Support Pension

 Seems easy, right?

When can a rating be assigned?

An impairment rating can only be assigned for permanent conditions which cause an impairment that is more likely than not to persist for more than 2 years.

A condition is permanent if:

  • the condition has been fully diagnosed by an appropriately qualified medical practitioner, and
  • the condition has been fully treated, and
  • the condition has been fully stabilised.

What does ‘fully diagnosed, fully treated & fully stabilised’ mean?

According to the Guide to Social Security Law (Version 1.191 – Released 12 November 2012), which is run on an Australian Government site and is therefore reliable (although you should always check for updates):

Fully diagnosed and fully treated

In determining whether a condition has been fully diagnosed by an appropriately qualified medical practitioner and whether it has been fully treated, the following is to be considered:

  • whether there is corroborating evidence of the condition, and
  • what treatment or rehabilitation has occurred in relation to the condition, and
  • whether treatment is continuing or is planned in the next 2 years.

Fully stabilised

A condition is fully stabilised if:

  • either the person has undertaken reasonable treatment for the condition and any further reasonable treatment is unlikely to result in significant functional improvement to a level enabling the person to undertake work in the next 2 years, or
  • the person has not undertaken reasonable treatment for the condition and:
  • significant functional improvement to a level enabling the person to undertake work in the next 2 years is not expected to result, even if the person undertakes reasonable treatment, or
  • there is a medical or other compelling reason for the person not to undertake reasonable treatment.

This is the point where most of our applications are rejected.

I suggest that, when writing a letter of appeal (or even your first statement), you address each point clearly and concisely.

When you get past this point, you can move on to your impairment…

Assessment of Impairment Ratings

As part of the qualification for a Disability Support Pension (DSP), a person must have one or more physical, intellectual or psychiatric impairment(s) that attract a total impairment rating of 20 points or more under the Impairment Tables.

For the purposes of DSP, the Impairment Tables are tables designed to assess impairment in relation to work. The tables were revised earlier this year, so you need to make sure that you are looking at the right information. (The Centrelink representative will always ask you if you looked at the most recent tables!)

The Tables:

    • are function based rather than diagnosis based,
    • describe functional activities, abilities, symptoms and limitations, and
    • are designed to assign ratings to determine the level of functional impact of impairment and not to assess conditions.

A claimant who has a total impairment rating of at least 20 points, must also have a continuing inability to work to qualify for DSP.

Now (I have to get a little lawyer-like), as per s 6(9) (this means section 6, sub-section 9) of the Social Security (Tables for the Assessment of Work-related Impairment for Disability Support Pension) Determination 2011:

(9)      There is no Table dealing specifically with pain and when assessing pain the following must be considered:

(a)    acute pain is a symptom which may result in short-term loss of functional capacity in more than one area of the body; and

(b)    chronic pain is a condition and, where it has been diagnosed, any resulting impairment should be assessed using the Table relevant to the area of function affected; and

(c)      whether the condition causing pain has been fully diagnosed, fully treated and fully stabilised for the purposes of subsections 6(5) and (6).

The statements in BOLD are what is important to us. We can use ALL the tables to get a total of 20 as we have a number of conditions that cause our impairment!

Section 10(5) states:

(5)                Where two or more conditions cause a common or combined impairment, a single rating should be assigned in relation to that common or combined impairment under a single Table.

(6)                Where a common or combined impairment resulting from two or more conditions is assessed in accordance with subsection 10(5), it is inappropriate to assign a separate impairment rating for each condition as this would result in the same impairment being assessed more than once.

Now, I don’t expect you to read all the tables (although I did) but have a look at the headings for each:

  • Table 1 – Functions Requiring Physical Exertion & Stamina
  • Table 2 – Upper Limb Function
  • Table 3 – Lower Limb Function
  • Table 4 – Spinal Function
  • Table 5 – Mental Health Function
  • Table 6 – Functioning Related to Alcohol, Drug & Other Substance Use
  • Table 7 – Brain Function
  • Table 8 – Communication Function
  • Table 9 – Intellectual Function
  • Table 10 – Digestive & Reproductive Function
  • Table 11 – Hearing & Other Functions of the Ear
  • Table 12 – Visual Function
  • Table 13 – Continence Function
  • Table 14 – Functions of the Skin
  • Table 15 – Functions of Consciousness

This is where, in your letter/statement, you get personal. Address each and every one of these tables, if they affect you. Give examples. Explain how it affects your life. the more information that you give, the better.

Your Letter

  • Attach every piece of information that you have from any doctors (you can ask them for copies of correspondence to other doctors)
  • Write EVERYTHING down – don’t leave something out because you don’t think it’s important.
  • Try not to write emotionally – it will probably make you very upset to write down how badly you feel but, they don’t care. Centrelink needs it written down clearly, concisely, even impersonally.
  • Spell check (AND have some-one else read through the letter). Basically, Centrelink doesn’t see you as an individual, so this is a letter from one professional to another

I am attaching the letter that I sent to Centrelink as an example. It may not be perfect but it achieved my goal and I received DSP.

I hope it can help some others.

Attention Single, Divorced and /or Friendless

 

Firstly, some facts (this is not me feeling sorry for myself, just facts):

  • I am single (read divorced and/or friendless depending on your situation)
  • I am sick (with no cure on the immediate horizon)
  • I have only one friend who actually visits with me
  • I have no particular interests outside my home

So, I was thinking, is this my lot in life forever? Will I ever meet a prospective partner? How will I meet a prospective partner? Does he deserve a partner who is continually unable to meet her responsibilities? Okay, forget a partner, how about some new friends?

These questions sent my mind racing – I can’t drive more than about 10 kilometres before my arms, shoulders and head start to hurt; I can’t go to parties (even if I was invited) because the noise and other distractions are too much for me to handle; there are no clubs or groups in my area that I wish to join. So, what is a FM sufferer to do?

Why, take to the internet, of course! ‘How to meet new people’ was my search term:

Succeed Socially.com offered a list of places to meet people

  • Through your friends, significant other, and other people you already know

This point obviously will not work for one in my situation

  • Work

I am still unable to work

  • Volunteering

As I am unable to be reliable in a work situation, I am unable to commit to volunteering. I used to volunteer regularly at a local legal centre – it was incredibly satisfying and I miss being able to help others.

  • Classes

I go to my self-help hydro groups, where the closest person in age to myself is about 25 years older than me. They are a lovely group at Hydro but I doubt greatly that we have very much in common outside being ill and/or disabled.

  • A club or organization

The appeal here is obvious. You join up and you instantly know a group of people who share a similar interest to yours. But what happens if you no longer have any interests? Other than researching fibromyalgia, spreading awareness about fibromyalgia and raising funds for fibromyalgia research. Kind of sounds like I should join or start my own fibromyalgia support group, right?  But, with this type of group, it would probably take all our efforts just to turn up to meetings, let alone maintain friendships outside the group.

  • A sports team or league

Are you kidding?

  • Through your religion

I am not religious. I believe in a higher being but I do not know of a public denomination which shares these same values.

  • Through your kids

Another moot point for me

  • Your living situation

Living in a large building with lots of other people your age around is better than being in a small place with no one who’s similar to you. Guess what my situation is? I live in a block of units (alone) where, currently, there is no-one with any similarities to me at all. How can this happen? (rhetorical question!)

  • Your family

No real help there, although my grandfather (before he died) tried to set me up with a 71-year-old ex-doctor.

  • At a party

Too much noise, too many people, just TOO!

  • An individual sport

How many FM sufferers do you know who do a sport? And I’m not one of them.

  • Online

Hmm…what would my ad look like:

SWF in chronic pain, with control freak tendencies, seeking understanding, compassionate friends with low expectations.

Would any of you answer that one?

 

There were a number of other suggestions but you get the idea…so, tell me, fibroMAGICians, what do you do?

 

After All…Tomorrow is Another Day.

 

So, it’s finally hit me…I’m home from Bali. Duh! you say, but I was able to stay in my little fantasy land for a whole week.

Despite coming home to: two telephone bills (home and mobile), a car registration notice, an invoice for three quarters of body corporate fees, an impending hospitalisation to withdraw from codeine, the spectre of a gallbladder operation (then disappearance of aforementioned operation), the new threat of a lesion on my liver, and an unexpectedly high bill from my handy-man; I was somehow able to hold onto my dream of returning to Bali for a year. Forget Eat, Pray, Love – it was just going to be Love, Love, Love!

WHO AM I KIDDING? For some unknown reason, today it hit me full force that I’m home and, most probably, staying here. I don’t know why it was today – nothing huge happened; but it slammed into me (kind of like those trucks that hit us during the night so we wake up in so much pain) – I’m on a disability pension. Yes, it is cheaper to live in Bali. Yes, I could rent out my unit. But I would still need to return every 3 months to continue receiving my pension, and airfares are not cheap.

This ‘little’ dose of reality brought back all the other stuff (above) that comes with being at home and, all of a sudden, I am overwhelmed. Too much, too quickly!

My reaction is a quick visit to the darkness of depression…

STOP! Wipe those idiot tears. You need some control!

I can’t control any of the bills or medical hassles so my antidote is to get some control over my surroundings – 8 shelves of books going to friends or the Op shop, 2 suitcases of clothes I don’t wear (but I might one day) going to be stored in Mommy’s garage and 4 bags of trash. There is stuff everywhere (I can’t do it all in one hit – I have Fibro, remember?) and I’m unhappy about going to bed, knowing that all this stuff will be waiting for me in the morning; but my exhaustion (and gravity) is dragging me down. So, now, not only is my head a mess but, so is the house (more so than before!)

But, as Scarlett said: I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.

 

P.S. The clean basket of laundry is still sitting on the floor of my bedroom.

P.P.S. And, maybe, I can still work out a way to Bali…

 

It’s a Blooming Miracle!

My grandmother used to have orchids. Every year, they would bloom beautifully and be displayed on the dining room table. In 1983, she died. The orchids stopped blooming. I tried to split them up and re-pot them to encourage them to bloom. My Mommy, uncle and I all got a pot. They didn’t bloom.

Just before my uncle had his operation, my pot grew a stalk. It’s going to bloom! And the operation went well.

Prior to getting my biopsy results, Mommy’s pot grew a stalk. It’s going to bloom! And the results were fine.

Last night, my uncle told me his orchid had sprouted a stalk. Wow! I told him that it must mean our luck was changing and more good things were going to happen.

Well, I have a major headache and I’m feeling totally lethargic. BUT don’t feel sorry for me…I’m just coming down from a massive high (natural, of course!)

I had a doctor’s appointment today, basically for more Centrelink paperwork, (they are just totally unable to organise all the paperwork to be done in one session!) at 3.30pm and was just leaving the house at 3pm when the phone rang. Yes, I answered it. It was the Centrelink lady (remember the one from last week?) Oh, great – just what I wanted: another conversation about how my condition is not stabilised!

BUT guess what? (and you’ve probably guessed considering I started a new paragraph for it) I got my disability support pension (with backpay from January)! Oh my! Giant sigh of relief mixed with joy. Thank you! Thank you! Thank you! She did say that Centrelink will check up along the way, in case I get better (I wish!) but that’s it – it’s mine. Thank you!

So yes, I’ve been on cloud nine for a couple of hours, unable to wipe the smile from my face. We (Mommy, my Uncle and I) like to think that my grandmother is watching over us. Corny, yes? But ever so nice.

Fibro – A Greater Impact than Cancer!

Fibromyalgia is disabling (duh!) and has a greater impact on functional status and well-being than other chronic diseases such as cancer, says a UK public health researchers report. The emotional burden of FM is felt by lay carers as well as sufferers.

The study aimed to investigate the functional status and well-being of people with ME/CFS and their lay carers, and to compare them with people with other chronic conditions. Since GPs may refer to cases of ME/CFS by different names, cases that had been diagnosed by GPs with any of the following: chronic fatigue syndrome (CFS), ME, post-viral asthenic syndrome (PVAS), fatigue syndrome (FS), fibromyalgia (FMS), post-infectious encephalitis (PIE) and post-viral fatigue syndrome (PVFS), were included in the study. Patients were considered as potential cases if any of the above diagnoses appeared in their individual electronic medical records.

As we know, diagnosis of our condition is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to the diverse clinical nature of the condition and a lack of reliable biomarkers for diagnosis and outcome measures. The well-being of family members and those who care for us are also likely to be affected.

The functional status and well-being of a well characterised sample of individuals was measured using SF-36, a widely used and well-validated instrument, which provides generic (i.e. universally-valued, and not specific to age, disease or condition or treatment) measures of disease impact on physical, physiological, social functioning and roles. Unlike disease specific measures, SF-36 can be adequately used for comparisons between people with a range of different conditions.

The scores for the Physical and Mental Health Component summaries and the scales within each of these domains were considerably and consistently lower in people with ME/CFS, when contrasted with individuals with a range of other chronic diseases. This demonstrates that ME/CFS is not only physically disabling, but also has a significant impact on mental health.

The results of the study highlight the disabling nature of ME/CFS (Just wish our social security departments were given a copy of the report!). However, the lack of bio-markers and the fluctuating nature and lack of specificity of symptoms makes disease characterisation and disability assessment challenging.

Quality of life is inversely related to distress, disability and loss of function, and is associated with the ability of individuals to remain active and perform roles in society. A major goal of people with chronic diseases is to achieve effectiveness in life and to preserve function and well-being. However, people with ME/CFS are (generally) failing to achieve these goals, and their carers’ emotional well-being is also being affected. Recognition of the level of disability faced by us is essential for planning support services that adequately meet our needs.

 

***I apologise if this was difficult to read – but you should see the actual study! I tried, as best I could, to use ‘normal’ English.