Not Totally Re-Assured

The ME Association have new advice on Swine Flu

http://www.meassociation.org.uk/content/view/925/161/

1  Are people with ME/CFS more at risk of catching swine flu?
 
Overall, the answer is probably no.  However, if you belong to a sub-group who easily pick up infections, especially coughs, colds and flu-like infections, then the risk of catching swine flu may well be slightly higher than for normal healthy people.

They are saying that generally people with ME/CFS  are not at increased risk of catching swine flu or having complications from it unless you have other underlying health problems (like asthma) or are severely affected or bedbound.

I’m not totally re-assured having had a minor viral infection in the past cause a chest infection which lasted for 2 months when my husband and brother got over the same bug in a week.

But they say:

“Although a variety of immune system abnormalities can occur in ME/CFS, they are not usually consistent with the sort of immune system deficiency that makes people much more susceptible to this type of infection.”

I’m trying to be more relaxed about it. But when a common cold can rob me of a couple of months it’s difficult not to be a bit worried about what effect swine flu might have.

I would just like the ME Association to place more emphasis on the risks for that sub-group who easily pick up infections, for those severely affected, for those bed-bound and for those for whom infection worsens their condition.  Because if a group like them don’t highlight the risk factors for these people to health professionals, then who will?

If I get swine flu will the nurse on the phoneline take any notice of my past experience with virus and colds lasting for months and affecting me badly? Or will they just say that as I don’t have asthma I’ll be fine?

I guess a lot of people think I am a bit paranoid worrying about this.  But when this virus could set me back for months, when I might face a sudden and significant debilitation, it’s kind of worrying.

Proof! It’s not in my head … it’s in my cells

M.E. is not in my head – it’s in my cells!

Dr Myhill has published a paper with a study showing how mitochondrial disfunction relates directly to level of incapacity and illness in ME/CFS sufferers.  In effect this could be a single blood test for diagnosing ME/CFS.

More research is needed to build on the findings of this small sample. What they haven’t established of course is whether this disfunction is primary to the conditions cause or a secondary feature. But it’s promising news all the same.

I’m eagerly awaiting the translation of this paper from all the science talk.  Dr Myhill does this to a certain extent on her website talking about cars and batteries and giving some advice on treatment/good practice.

I’m no expert but what did excite me was this diagram from page 11 of the paper. In the first diagram, A, it shows subject’s CFS ability scale across the bottom and level of mitochondrial energy along the side.  (The ability scale number was reached after other causes of patient’s symptoms had been explored and appropriate treatments had been tried).

Chronic fatigue syndrome and mitochondrial dysfunction - diagram from page 11

Broadly speaking it looks to me like the more severe the ME/CFS the lower the mitochondrial energy score.  And none of the control subjects had that same low level cell energy.

Now unless you have £249 to get the necessary blood test(s) done privately through Dr Myhill it’s unlikely you’ll be having this as a diagnostic tool in the near future.  Let’s face it there’s loads of great research going on out there informing theories about this illness which are a long way from bringing solutions into our healthcare system.

But it’s refreshing to be offered yet more insights into the biomedical nature of ME/CFS.

Especially as the Judicial Review into NICE Guidelines on ME/CFS will be taking place in a  few weeks time on 11 and 12 February 2009.

It is extraordinary that a set of clinical guidelines into a condition has not only been called “unfit for purpose” by leading ME groups, but that people with ME felt so outraged about the guidelines that they want them challenged in court. Such is the depth of feeling about the process used to determine these guidelines which offer CBT and GET as frontline “treatments” for the condition and disregarded the studies, papers and first hand expertise of specialists in biomedical research into ME/CFS.

You can, if you are well enough, attend the court and witness the review for yourself. This supporters site gives you all the information you need to attend on 11 and/or 12 February 209.

You may also be interested in:

• Video by supporter Ann Barclay (Jan 2009) explaining about the judicial review and how you can help
• ME Action’s site about the judicial review including papers about why it is needed.  Prejudice-based Medicine?  by Margaret Williams makes very interesting reading as it explains the make up of the advisory panel for the guidelines and who was excluded.
• Letter from The One Click Group’s Jane Bryant last year after successfully raising £20,000 to take this to court. Updates and information from the group onthis judicial review is frustrastingly sparse (few resources and a big battle ahead I suspect!) and often hidden away in word or pdf documents so I suspect does not show up in web searches.
• ME Association response to NICE guidelines and explain why they are unfit for purpose

T’is the Season for Books

T’is the season for books it seems.

I have six books I’d like to tell you about – including one of my own:

• 366 Days of Me and M.E.
• Violently Beautiful
• Creative For A Second
• The State of Me
• Life Disrupted
• Aurora Blues

366 Days of Me and M.E.

I just printed my first Blurb book (print on demand) of my year long daily self portrait project. It’s called 366 Days With Me and ME and I made it available to buy just in case it captured interest.  Read more on my art blog post.

Available from Blurb

Violently Beautiful

Tanya, aka RockstarVanity from Momentary Solutions has a beautiful Blurb book now available of her wonderful photography. Tanya is a freelance photographer who juggles her professional and personal commitments with life with ME. The book is called Violently Beautiful and you can read more about it on her blog.

Available from Blurb

Creative For A Second

A collection of creative works from people with ME all beautifully presented in this open publication available to view online.  It’s called Creative For A Second and you can see the book and find out more on the official web site.

“Creative For A Second was born when artist and CFS/ME sufferer Kirrily Anderson began to notice the large amount of creativity amongst the CFS/ME community.

Seeing an opportunity to highlight this creativity and spread awareness, Kirrily began to contact fellow creative sufferers and after much interest decided to collate people’s artwork and experiences and put it all together in a book.”

Available online at the official web site www.creativeforasecond.com

The State of Me

NMJ (Nasim Marie Jafry) of Velo-Gubbed Legs has her debut novel published this month. It’s called The State of Me and draws on the author’s own experience of life with ME. The central character is a 20 year old student struck down by a mystery illness which leaves her debilitated and bed-ridden.

“She is eventually diagnosed with M.E, a cruel illness that she must learn to live with over the next decade. All of her relationships are tested and changed by her condition, but Helen s story is so much more than an account of her suffering. Far from it.
The State of Me explores the loneliness and chaos of one of the most misunderstood illnesses of our time, but also celebrates the importance of family, friendships, and sexual love.”

Available from Amazon UK and Amazon.com and I imagine lots of other bookstores too (ISBN 1906321051)

Read more about the novel and the author on her blog.

Life Disrupted

Laurie Edwards is a writer, tutor and blogger who tries to balance life with multiple chronic illnesses (PCD, bronchiectasis, celiac disease, etc). She has just had her book published Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. ISBN 0802716490.

Available from Amazon UK Amazon.com Powell’s Books or Porter Square Books

Read more from Laurie Edwards on her blog.

 Aurora Blues

Finally I’d like to mention the novel by my friend Nick Scott Donald called Aurora Blues. I helped out with some of the proofing and the cover design.  ISBN 190621042X

“Angels and acrimony; lust and loathing; joy and jealousy. These are all uncovered when Eve – a young woman on the verge of despair – is inspired by a powerful recurring dream to return to her old home-town to find her one true love. But it soon becomes clear that Eve’s old friends and neighbours are yearning for love as much as she is. Mother Nature and Fate are warriors in a powerful struggle between angels and demons, in a town where potent emotion simmers beneath sweetness and civility. But which side will win the struggle? “

Available from Amazon UK Amazon.com and other bookstores.

Things My Cat Likes To Eat

Well this post doesn’t have much to do with my illness but my life isn’t just about my illness so I thought I’d try talking about something different. Also enjoying a simpler life enhances my joy of simple things.

Like – my cat, Flyman (his previous owner worked in the theatre - what is a flyman? ).

Flyman is very food focused.  He’s pretty well behaved but from time to time he sticks his head in a finished bowl or plate oF something that’s been left within his reach. 

So, by accident, over the years I’ve discovered he’s very partial to (as in purrs like crazy and acts demented for):

• Heinz cream of tomato soup (other brands he’s not so keen on)
• Curry (the sauce mainly)
• Strawberry yogurt
• Butter
• Chips
• Dried figs

The dried figs is a recent and particularly disturbing discovery.  My dad says Flyman also likes to eat cheese and crisps when he’s at their house.

I think he is all time favourite is the tomato soup.  He goes crazy if we have it. 

When he had to had some of his teeth removed a couple of years ago (from old age and not from eating rubbish I may add!) the vet told us not to feed him solid food for 24 hours.  Give him some soup instead the vet said – a meat broth with the chunks sieved out. 

Would he eat broth?  No.  Did he end up wth his own portion of tomato soup?  Of course he did.