Today Is M.E. Awareness Day

The Hub has M.E. and I had intended to write about it and him but – somewhat ironically – after the day I’ve had, I’m too tired to blog.

Instead, I will re-post last year’s article (which is actually a re-post from the year before, but nothing has changed so I don’t feel guilty), and ask you to spare a thought for people like the Hub, facing prejudice and disdain from those who believe he is too lazy to work, on his best days; and too lazy to get up, on his worst.

 

Today is International CFS/ME Day.

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work.  I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

• Yuppie Flu
• Myalgic Encephalomyelitis
• Chronic Fatigue Syndrome
• Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’.  Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’  Now that person does have it, and it’s been a lot longer than six months.  I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat.  It doesn’t help that many in the medical profession don’t believe it exists.  It took two years before the Hub was taken seriously by a doctor.  He would be in bed for weeks.  When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’  One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took many more months for him to be officially diagnosed: the only way to do it was to rule out anything else.  He has had every kind of scan, blood test, whatever, available on the NHS.  They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

• severe, debilitating and disabling fatigue
• poor concentration
• brain fog
• poor memory
• useless sleep i.e. you never feel refreshed
• muscle pain
• headaches
• migraines
• joint pain and inflammation
• swollen glands
• sore throat
• hot sweats
• cold sweats
• noise sensitivity
• light sensitivity
• anxiety
• insomnia
• too much sleep with no benefit
• short-lived paralysis
• numbness
• twitching muscles
• tinnitus
• blackouts
• depression
• feeling spaced out
• mood swings, particularly bad moods
• nausea
• IBS
• lack of temperature control
• allergies
• chest pain
• sinusitis 

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit.  They simply don’t have the required energy.  If they live alone, offer to help with their shopping, take them to appointments, or anything else they might need.

Be nice.  Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful yourself: slow down; don’t feel the need to do everything.  Believe me, M.E. can happen to anyone.

*

An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness.

I couldn’t do it.  The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold.  I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

*

Two Useful Links:

If you need help claiming benefits: AfME Fact Sheet

From a convert to the cause: Daily Mail Article

 

A Massive ‘Thank You’ And An Update

What brilliant readers you are!  Thank you all so much for your supportive comments on yesterday’s post.  I can’t tell you how much it means to me.  I sometimes feel like we are living in a vacuum, coping with ill-health, no work, no money, and little support.  I haven’t felt like that today.

Thank you.

I want to address a few issues that arose from the comments. 

I don’t read the Mail; I linked to the article from a Google alert I have set up for all CFS items that appear online.  This particular article was written for their Science & Tech page.  The Telegraph also covered the Skiver app story, but the tone was not so low.

Making a formal complaint: I have to admit, it never occurred to me.  I have strong feelings about the right to free speech and a free press: Ms Rees is entitled to her opinion, however misguided I might think her, or how inconvenient that may be to me.  I had no compunction in availing myself of the right to upbraid her: freedom of speech works both ways. 

The reporter may have been insensitive – it was her ‘Poor you’ after the mention of CFS that so enraged me – but I’m not convinced she broke any guidelines, so I don’t feel I have the right to complain.  I do very much appreciate your indignation, however; and I hope you don’t think I’m letting you down.

What I did do immediately after posting last night was send the link to the MailOnline editor, with a request that s/he forward it to Ms Rees.  I had to laugh; the automated reply came back with this information:

Our Email Support Service is able to provide you with :

Information on CFS/M.E.
Details of local NHS services for CFS/M.E.
Support to help you cope with the illness
Support for carers

I also sent the Mail link to Action for M.E., a charity campaigning for better recognition of the condition.  They had this to say:

Like you, we took serious issue with the reports in yesterday’s media that make light of the ‘Skiver’ app encouraging people to use CFS/M.E. as an excuse to take days off sick.
 
We wrote to the Daily Mail and the Telegraph expressing our concern. We also wrote to the makers of the app itself, who have been in touch to apologise. You can read about this here: http://www.afme.org.uk/news.asp?newsid=1079

I was pleased to note that they had acted so quickly.  You can read the whole article at the above link but here’s the important bit:

A senior Gospelware representative has replied, saying:
 
“Please accept my sincere apologies if we upset or offended you or your members in any way. The app was meant to be a bit of fun, and from feedback I now realise that we got it totally wrong in using CFS in this case.

It hadn’t occurred to me to complain to the app maker for trivialising CFS, so I’m glad to know the people at AfME are on the ball.

I haven’t had a response yet from Gwyneth Rees; if I do hear anything, I will let you know.

Once again I’d like to say a big ‘thank you’ to everyone for your support; it means much more than you will ever know.

An Open Letter To Gwyneth Rees, MailOnline Reporter

I am furious.

My husband has severe CFS/ME, and has had it since 1996.  I read your article in MailOnline.  You, Gwyneth Rees, gleefully suggest that your readers should use the new Skiver app to come up with a suitable illness to get a day off work:

You could just have a one-day migraine, for instance, or you may be struck down with Chronic Fatigue Syndrome, accompanied by severe headaches, high fever, stiff neck and sore throat. Poor you.

I get that it is a light-hearted piece but it is inappropriate and insensitive to CFS sufferers – and they do suffer, believe me; I see it every day, pain etched into my husband’s face.  Try substituting Cancer/Multiple Sclerosis/AIDS for CFS in that quote, and see how many cheap laughs you get.  (And before you accuse me of being as flippant as you, a random search for ‘List of chronic illnesses’ threw up all of those and CFS, every time.)

I wonder how many migraine sufferers find your comment amusing?  Incidentally, migraine is one of the many symptoms CFS patients have to deal with.  Try having that on top of arthralgia, light sensitivity, noise sensitivity, dizziness, nausea, sleep of such poor quality that all it gives is a respite from the daily grind of simply existing, and, of course, fatigue, which is not simply a case of feeling over-tired after a busy day, but prevents you from getting out of bed on your worst days and gives you an hour on your best day, if you’re lucky, in which to do the thousand things your brain wants to do – because there’s nothing wrong with your mind – but of which your body is incapable.

This is not a comprehensive list of CFS symptoms, by the way; merely the most prevalent in my husband’s case.  Every sufferer is different. 

Your article was crass and irresponsible and you bring shame on your profession.

http://www.dailymail.co.uk/sciencetech/article-1366372/Skiver-How-phone-help-skip-work.html

Of This, That ‘n’ T’other

I’ll get the serious stuff out of the way first.

• I don’t know whether to be pleased or irritated with an article that I came across: a doctor who writes for the Daily Mail magnanimously concedes -below an article on haemorrhoids – that CFS/ME is ‘real’ because he attended a conference that said so.  Thanks, Doc; I’m sure the estimated 250,000 sufferers in this country, many of whom have doctors as uninterested and unsympathetic as you have been, are grateful to be taken out of the category Lying, Time-Wasting Toe-Rag.  I’m ambivalent because yes, it makes me angry that anyone would think my hard-working, hard-playing husband would prefer to lie around the house faking pain and fatigue than provide for his family and enjoy a rich life, maybe playing football with his sons or taking his wife out to dinner; but our ME community is so reviled amongst so many in the medical profession that any acknowledgment that this is a real and debilitating condition is welcome, no matter how patronising the delivery.
• The Hub took part in a study of CFS/ME patients a few years ago, called the FINE Trial (Fatigue Intervention by Nurses Evaluation).  A nurse came to the house once a month for about six months and talked with him.  The idea was to see if a talking cure worked – presumably to test the theory that it was all in his head.  It didn’t help much – presumably because it’s not all in his head.  What did help the Hub was having a sympathetic ear from a stranger; I don’t think people realise the deleterious effect on the psyche when even family and friends – those alleged to know your character – think you’re idle and/or faking it.  There was one person who told the Hub ‘I wish I could get it; I could do with six months off work.’  Try fourteen years and see if you still feel the same.
• You can read a simple summary of the report here.  The conclusion I found interesting was: supportive listening is not an effective treatment for CFS/M.E.  No kidding.  Supportive listening won’t fix a broken leg either; I wonder why that is?
• Here’s a cartoon that pretty much sums up the medical position on CFS/ME:

That’s enough bitterness for one day; this is supposed to be a funny blog.

• I heard a quote yesterday, attributed to the writer Kate Fox: Why do Geordies have an existential problem?  Because they’re always saying, ‘Why I?’ 
• It’s not the exact quote; I Googled it and couldn’t find it, but I did come across a poem of hers that tickled me, especially this line:     Glad never to leave one particular Lancashire town?/That’s Stockport syndrome.
• A sad exemplar of our times over at Parentdish: a reality tv show in the States about a modern Partridge Family has not been aired for over two years because the family is – wait for it – too happy: Despite two years of effort by a television crew to show the seamy underbelly of the family Witchger, CNN reports too many family confessionals ended with smiling kids and parents saying, “It was really fun.”
• I had a giggle at a friend’s recent Facebook status; she has a husband named Brian; I’m pretty sure she meant to type ‘brain’: Going to sleep now; worn out from brian’s overactivity.

Finally, we haven’t had a poem for at least two days, so here’s a bit of fluff for Carry on Tuesday.  The prompt was to use the line One misty moisty morning from the 1973 Steeleye Span song.  Don’t ask me how I ended up with this, because I have no idea:

Boat Race

One misty, moisty morning
a hoity-toity Cambridge few
goaded the gangly, spangley crew
who wore the Oxford Blue:

You shall not prevail, they cried;
when the Thames has reached high tide
we’ll kick your Cox over the side
and then the rest of you.

  

I don’t even watch the boat race, though I still sigh over the memory of Rob Lowe in Oxford Blues – and any other film/tv/photograph in which he appears. 

Sorry, I have to stop typing now; I appear to be drooling.