CHAOSTOCOSMOS

Saturday, 30 April 2011

Using 140 characters to chart my symptoms

140-characters.svg-300x239The number 140 seems to have taken on a life of it’s own since becoming the de facto limit imposed by Twitter. For many of us with chronic illnesses, this 140 character limit is also the limit of the physical or mental effort we are able to manage at any one time.

Over the last few months, I’ve also been using the 140 character limit to log my symptoms and how I feel on any given day. Whilst I don’t often feel up to writing much, most days I can, just, manage that short, sharp notation. With practice I’ve learned how to hone it so it retains enough meaning that I can understand and expand upon it later.

Of course I could have done this with Twitter, but what I really wanted was a means to collect a log of these notes. If I used my regular twitter account I’d not only bore my followers to death with daily winging, it would take some setting up – that once I could have managed easily, but has become now too much of a fiddle - to ensure that only the relevant tweets were archived somewhere.

So instead, I’ve been collecting these notations with the InstantMe facility at PatientsLikeMe. Sometimes, when I really do want to share my symptoms (or just have a good whine), I’ll paste that 140 character summary into Hellotxt, which, in turn, is set to update my Facebook status and Twitter.

As this and many other things I maintain online have been automated, I can maintain my presence in various places, without any additional effort.

As I say, I expand upon the 140 characters in order to keep a proper record of the symptoms I’ve had each day. This is essential for many reasons; so I know which issues I need to bring up with my GP on the next visit; so that I can track what events, foods, medicines, etc., cause or worsen (or improve) any given symptom, side-effect or set of them. It’s also because I’ve been TOLD to keep exactly such symptom diary by various people involved in my medical care.

It matters not whether we keep these online or on paper, so I absolutely reject the idea that If you can tweet you can work, because there’s a world of difference between being able to half-coherently mumble a short note whilst reclining in bed in the clothes you’ve had on and unwashed for the last 6 days and, getting up, getting showered, getting dressed – yeah, you take these things for granted, when you’re ill they take all the energy you had – then getting to a non-existent job on public transport that doesn’t run, let alone working!

One idiot once told me that if I can blog I can do a job too.

Similarly, the odd post, written in crappy English, sometimes done in small instalments over days – most of which are to do with my illness or ways of trying to deal with it – does not mean I can do something well enough or often enough to be paid, even if you took out the preparation and travel.

Anyway, having kept the 140 character notes online, it probably would have made sense to post the expanded versions online too, to this blog perhaps, but I haven’t done so, but instead I’ve been writing them in a fat A5 diary, only because I was given one that I wasn’t going to use for any other reason.

ATOS are perfectly welcome to come round and read that, because, no doubt, there’s some Nazi out there who thinks that if I can scrawl stuff about having a headache so bad I couldn’t see or sit up, usually several days after the event, or noting when I have IBS attacks or am constipated again, I could work.

This is also evidence to show the extent of my disabilities, from noting how often I’m able (or not) to go out and the effects I feel when I do, as I noted the other day with the cruel irony that my pain meds weren’t working on Thursday, as a result of going out to the doctor on Wednesday to get pain meds.

Through this system, I’m better organised, even if I’m still not able to do anything, but at least I have tracked and identified many reasons why.

This gives me confidence, because I now know and can show that I don’t work because I can’t work and that I lie down because otherwise I will collapse and, that these are not odd, one-off symptoms, but clearly repetitive patterns.

(PS: In the “you might also like” department is 2 Easy Ways To Create An Impressive Timeline For Free, as it occurred to me that in our on-going quest to understand our often overlapping and confusing symptom sets and illnesses, it might be an idea to plot the timeline of what we suffered and when.)

What is it like to have ME?

I feel all of this every day, yet, even after all these years, I still find it incredibly difficult to put into words, so I urge you to watch the video.

Day Thirty: Whomever You Find Most Attractive In This World

ca. 2006 --- Dress by Moschino Cheap & Chic, hair and makeup by Andrea Clarke using Frederic Fekkai and Chanel and styling by Deborah Brett. --- Image by © Naomi Kaltman/Corbis Outline

Attractive as in would be happy to emulate. Sadly, neither my cooking, nor my boobs are up to Nigella’s standards, but there’s always imagination.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Friday, 29 April 2011

Hairball Awareness Day

image

Happy? That’s not how I feel when the cat chucks them up on the carpet! Smile

April 29, 2011: National Hairball Awareness Day

Day Twenty-Nine: Somewhere You Want To Visit

image

One day, before it sinks, or I die, whichever is the sooner.

Once I get to Venice, my daydream takes a ferry on to Greece to revisit Athens. And after that, I’d like to buy a one way ticket to the islands.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Thursday, 28 April 2011

Who is the Most Deserving?

"If you ever find yourself in the same position as Nadeem or Pete or Mary or Dan there simply won't be state support any more to catch you when you fall. That's the story behind these headlines. One day, statistics show that it will be you or your Gran or your Mum or Dad or son and there just won't be any help available any more. At the moment, you probably find it impossible to believe that it could happen to you. OR that you could be as ill as the people above and be found 'Fit for Work'. I hope you believe me before the Welfare Reform Bill goes through and it's too late to stop it."

Diary of a Benefit Scrounger: Who is the Most Deserving?

Day Twenty-Eight: A Drawing

image

Which I drew when I was about 16.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Wednesday, 27 April 2011

Day Twenty-Seven: A Picture Of Where You’re From

image

Think that means I’m one of Birmingham’s best exports! Smile 

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Tuesday, 26 April 2011

Day Twenty-Six: A Picture From One Of The Greatest Days Of Your Life

Sonoma Graphics

No wedding photos here, sorry, but a photo of Bob Marley at The Lyceum 1975 by ~sonomaman on deviantART

I didn’t have my own camera then and I was way, way at the back of the theatre, but I was there on 18 July 1975 and it was magical. It was one of life's high spots: a moment I'm really glad I lived.

Have a listen to Kinky Reggae from the Lyceum concert: it still sounds good and fresh today.

Monday, 25 April 2011

Day Twenty-Five: One Of Your Most Prized Possessions

image

You can’t own cats: they decidedly possess you and I’m really not at all attached to material things. Twice now I’ve moved country and both times, I left most of my possessions behind, which I’ve never regretted.

Whilst I buy stuff to use and enjoy now, I’ve never really become so attached to stuff that I couldn’t bear to part with something once that use was over, but perhaps the one thing I had, which I prized most when I did have it, was my BMW. Yes, I know, it could seem dreadfully middle class, however, rest assured, the only golf I've ever played was crazy!

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Sunday, 24 April 2011

The Reluctant Bunny

100_0998

Perhaps he remembers what he used to do to the conejitos (baby wabbits) back at his home in Tenerife (no, you wouldn’t want me to fully explain), but Balu really didn’t want to pose as the Easter Bunny’s stand-in.

100_1001

Meanwhile, Kitty had this to *say* about the matter. If that had been a real rabbit, it would have ended up in the pot!

Yeah, maybe I should get a life (anyone know where to buy one cheap?) and stop torturing the cats. Happy Easter!

Links of Interest (weekly)

Posted from Diigo. The rest of my favorite links are here.

Day Twenty-Four: Something Embarrassing In Your Room

image

If something was truly embarrassing, I’d hardly tell you about it, would I? The mess would probably be considered embarrassing by other people though.

Oh, I won’t deny that I never liked housework in the first place, but now that I simply can’t stand up to do anything, well, stuff simply doesn’t get done.

Clothes don’t get put away, because I don’t have enough places to put them and I keep trying to sort my wardrobe, but after 5-10 minutes I start shaking from the exertion and have to lie down. The overflow now lives in a place called the “floordrobe” where it will stay until I can manage it, whenever that is.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Saturday, 23 April 2011

Day Twenty-Three: Favourite Music Video

Actually, I’m probably the wrong generation for music videos. I remember all the fuss for Michael Jackson’s Thriller video, I saw MTV a couple of times, but after that, I never really saw the point. If I want to listen to music, I’ll listen to it and, generally, I’ll do something else at the same time. I’m also less bothered about what artists look like and more concerned with talent, which seems to be the opposite to what’s needed to make a video with any appeal.

Anyway, I picked this old classic of some friends of mine from 1982, not for it’s quality particularly, but because of the happy memories it brings back.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Friday, 22 April 2011

Cats in cat beds

100_0990

A rare sight indeed. Don’t worry, it didn’t last long! Open-mouthed smile

Invisible illness bingo

image

Via livingwithautoimmune from danathepaina

Day Twenty-Two: Picture Of You On This Day

image

On this day, minus a day, but with so many years in between, who’s going to argue over 24 hours. April 21st, 1957 – I’m the one in the white frock.

Looking at this, I’m more surprised that colour film was available then!

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Thursday, 21 April 2011

A busy day

image

Remember this when you think you’ve achieved nothing in a day.

Via livingwithautoimmune reblogged from fibrofighter

Day Twenty-One: Favourite Movie Quote

imageOh, the British abroad!
I'd set an examination at Dover and turn back any tourists who failed
.”

- Elenor Lavish (Dame Judy Dench), in A Room with a View.

That quote came to me on oh so many – too many - occasions during my 16 years in Tenerife.

At best, the average British tourist is his/her worst enemy for checking their brain in left-luggage at Gatwick airport and not taking the even the most basic precautions that they would at home … then wondering why the valuables they left on show caused their hire car to be broken into, or for thieves to walk in through wide-open doors and windows.

At worst, the drunken louts and morally suspect (not that I’m pretending I’m in any way superior) make life less pleasant for the rest of us when we are all “tarred with the same brush” and treated badly as a result.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Wednesday, 20 April 2011

Do bacteria control your brain?

imageA new study has found evidence suggesting that you are not what you eat, so much as you are what's living in your gut. In mice, at least, the presence of normal gut bacteria has a significant impact on how an individual mouse behaves, and how its brain develops.”

Yeah, humans are not mice, but my gut feeling (groan, pun intended) as an IBS, fibromyalgia, ME, whatever the hell else is causing whichever symptom today, sufferer is that this could well have something to do with it.

Do bacteria control your brain?

Sunbathers

100_0989

In sunny Britain, no less! I know, it’s a shock to the system, isn’t it? Smile

Easter Buggery and a Kindling interest

image

These days, I’ll use any excuse to pretty up my surroundings – funny how I didn’t feel the need to do this when I lived among the constant beauty and magnificent scenery of Tenerife – so yesterday, I stuck up a bit of Easter bunting, peppered a small wreath with artificial daffodils (the eggs I was hoping to decorate it with caused me so much grief, they ended up just being thrown in a basket) and, finally arranged a few silk Spring flowers.

To do this, I was sat up in bed for a little while longer than usual and on my feet for an extra 10 minutes or so, having made a handful more journeys to the kitchen and back or the hallway outside my bedroom door (yeah, long-haul!)

Just that caused unbearable pain in my feet and ankles (from, yet again, the pooling of blood that my heart can’t pump to my head) that was so severe, I couldn’t get comfortable in bed and spent a whole night with poor sleep, even though I’d spent the afternoon with my feet elevated to help mitigate it.

Today, I can bearly stand up at all without my feet and legs giving way or my head going swimmy and the waves of malaise and nausea crashing over me.

To arrange the flowers, I needed to cut half a dozen relatively thin plastic covered wire stems with wire cutters. Clearly, I shouldn’t have really: it was difficult – I hardly had the strength and grip – and painful at the time; so much so that my mother (87) had to help me finish doing this. By last night, my hands and wrists were so painful, I couldn’t even bear to rest them on the bed. The pain in them is making me feel sick today, despite medication.

This seems an inordinately high price to pay just for some “cheap”, transient decorations and the physical pain right now is threatening to overpower any psychological benefit that I might have derived from cheering myself up.

On a positive note, however, while we are on the subject of hand and wrist pain, I finally broke down and bought myself a Kindle.

For years now I’ve not been able to read books because I couldn’t comfortably hold a book for long enough. It would hurt my arms and wrists, then neck and shoulders; leaning the book on my stomach would hurt; the light or angle would never be right for me to be able to see well enough: in short, it had stopped being the pleasure I’d once enjoyed.

There’s still the problem that I can’t often concentrate or take in more than a few pages at a time, but at least the Kindle is proving to be a great help towards alleviating the physical problems. I still can’t hold it up, as suggested in the advertising images, but I can hold it for a lot longer than I could have held a small paperback book, provided I rest my arm and hand on something.

Turning the pages is a much easier task with a button either side of the Kindle, so I can alternate hands too and, the screen is much clearer and easier for me to see than print, especially as I can change the size of the text.

Whilst I probably won’t use it often, even the robot voices that read out the text-to-speech function are bearable enough to listen to, if all else fails.

If you have any similar afflictions and are considering a Kindle, but are not sure if it’s worth the investment, my hunch and experience says it is.

So far, I’ve downloaded all the free classics I never previously got around to reading (I do hope to one day, even though the experience may be a little tainted, having already seen the DVD), plus some reference materials that may come in handy.

Additionally, I’m already about a quarter of the way through reading John Mole’s “It’s All Greek To Me!”, which is a fairly amazing feet given my usual ability, since I only opened the Kindle box on Saturday.

There will still be a handful of books printed on dead trees that I shall keep for the time being, while I already have them and they’re not (yet?) available as a Kindle edition, but those which are, I intend to swap. Hopefully, selling my books will help fund their replacements.

It’s funny, but despite all the advantages, the fact that I’m not resistant to change and consider myself tech-friendly, it still doesn’t quite feel natural holding this small technological version of the old school slate instead of a “proper” book. I’m sure I’ll make that adaptation rapidly though.

Above all, I want the freedom that not lugging books around, whether one-by-one to read, or in bulk when removing, which this gadget will bring and, better, no more trees need be cut down to provide my reading material.

I hate housework!

image

I hate housework! You make the beds, you do the dishes and six months later you have to start all over again.” - Joan Rivers

Of course, when illness and / or disability prevents you from being able to do much in the housework line, this stops being quite so funny.

Personally, I’ll readily admit that I’ve have never liked housework and already subscribe to the idea that “A clean house is the sign of a wasted life” or happily go along with Quentin Crisp’s assertion that, “There is no need to do any housework at all. After the first four years the dirt doesn't get any worse.”

There really are more important considerations in life. This used to be work or going out and actually “living”. Nowadays it’s pacing myself so that I use what precious little energy I do have on things that have to be done and, mostly, avoiding crashes that cause long-term exhaustion and unbearable pain.

imageSure, I would like to live in tidier and cleaner surroundings. If I had any control over this, I’d have easier to clean surfaces like solid floors, for instance, or I’d do what I did years ago when my job didn’t allow me time to do my own cleaning and hire someone to come in once a week.

Since I can’t, physically, do any more than the near zero amount I do, I’m not prepared to add to my own stress by feeling guilty.

Day Twenty: A 10+ Year Old Picture

image
This was taken in 1997, in the office in Las Galletas in Tenerife, where I worked in the last job full-time I ever had and was just shortly before they let me go because I was no longer able to manage to keep up.

Two years previously, I’d lost my job after I’d been rushed into hospital in acute pain and this had been my first – and last - attempt at getting back into the job market.

That, I now know, was the start of my fibromyalgia and the beginning of the slippery slope that I’ve been sliding down ever since, which suddenly became a heck of a lot steeper once I returned to the crap climate and the UK in 2008.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Tuesday, 19 April 2011

The Media and ME by Margaret Williams

Permission to Repost

http://www.meactionuk.org.uk/The-Media-and-ME.htm

Ever since the foundation of the UK Science Media Centre in 1999 – whose purpose is to ensure that the media deliver only headline science stories that accord with Government policies – the reporting of the biomedical science surrounding ME/CFS has been noticeable by its absence. Instead, there has been a wealth of spin promoting the benefits and success of CBT and GET for every disorder imaginable, including ME/CFS.

In plain terms, the Science Media Centre presents only a one-sided view of the available information about ME/CFS, and direct contact with editors and health editors of broadsheet newspapers has revealed their policy of limiting their reporting of ME/CFS to what they receive from the Science Media Centre.

The fanfare of unlimited praise for the PACE Trial results at the press conference held at the Science Media Centre on 17th February 2011 is a case in point, with the media failing to use its critical faculties and regurgitating only what it had been spoon-fed.

There are a staggering number of flaws in the PACE Trial article published in The Lancet (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Peter D White et al. The Lancet, 18 February 2011 doi:10.1016/S0140-6736(11)60096-2), not one of which was mentioned in the press conference.

These flaws and errors have been identified in a detailed complaint/statistical analysis sent by Professor Malcolm Hooper to The Lancet on 28th March 2011, upon which The Lancet has asked Professor Peter White to comment (a response with which Professor White has apparently not complied within the time allotted for its receipt by The Lancet).

It is understood that under the Elsevier complaints policy, Professor Hooper will be asked to respond to Professor White’s reply when it is received by The Lancet; it is also understood that the PACE Trial article was to be sent for re-review by different reviewers and statisticians whilst The Lancet was awaiting Professor White’s comments on Professor Hooper’s complaint.

Professor Hooper’s analysis will shortly be placed in the public domain; he had agreed with The Lancet to withhold his complaint from publication during the time allotted by The Lancet to Professor White to respond to it, but this agreed time limit has now expired.

There is one crucial point that should not be overlooked amidst the multitude of comments, spin, disquiet and anger surrounding the clearly contrived and exaggerated results of the PACE Trial, which is that if the PACE Trial Investigators had claimed to be studying the effect of CBT/GET on people with medically unexplained or idiosyncratic “fatigue”, few people would have objected.

What is fuelling the opprobrium is the fact that the PACE Trial Investigators insist that they have been studying those with “CFS/ME”, which is how they refer to the neuroimmune disorder ME/CFS.

The pressing question has to be how the Wessely School can be permitted to disregard the ever-increasing biomedical evidence-base on ME/CFS and to refuse – on no evidence whatever -- to accept the WHO classification of ME/CFS as a neurological disorder.

What can be done to halt the Wessely School’s anti-science activities and misinformation about ME/CFS which they propagate and disseminate with consummate skill?  Since they will not budge from their beliefs, could they be right and the biomedical scientists be wrong?  Not at all: the Wessely School is gravely mistaken about the nature of ME/CFS and about their ascription of its symptomatology to a somatoform disorder.

In 1978 (33 years ago), the BMJ published a summary of the symposium on ME held that year at The Royal Society of Medicine:

there was clear agreement that myalgic encephalomyelitis is a distinct nosological entity. Other terms used to describe the disease were rejected as unsatisfactory for various reasons: the cardinal, clinical features show that the disorder is an encephalomyelitis….Some authors have attempted to dismiss this disease as hysterical, but the evidence now makes such a tenet unacceptable….The organic basis is clear – from the finding that the putative agent can be transferred to monkeys, the detection of an increased urinary output of creatine, the persistent findings of abnormal lymphocytes in the peripheral blood of some patients, the presence of lymphocytes and increased protein concentration in the cerebrospinal fluid of occasional patients, and the neurological findings” (BMJ 3rd June 1978).

Apart from their close involvement with the medical and permanent health insurance industry and the unpalatable fact that their professional lives may be shown to have been spent in a null field of research (ie. trying to prove that ME/CFS is an aberrant illness belief), it remains a mystery as to why, as bona fide mental health researchers, the Wessely School so persistently refuse to engage with the extensive biomedical evidence-base that exists on ME/CFS.

As Dr David Bell said in his book “Faces of CFS – Case Histories of Chronic Fatigue Syndrome” (Lyndonville, New York, 2000): “I have no problem with not understanding the exact mechanism of the symptoms of CFS…I do have a problem with the lack of respect given patients with poorly understood neurological disease”. Bell points out that the chest pains, racing pulse, shortness of breath, flushing, trembling, twitching, difficulty maintaining balance, headache, physiological exhaustion to the point of collapse, inability to walk, and pooling of blood on standing experienced by ME/CFS patients all result, not from what Wessely School psychiatrists deem to be deconditioning or “hypervigilance to normal bodily sensations”, but from the dysautonomia that is so prevalent in ME/CFS (in an effort to supply blood to the brain, the patient’s blood pressure sky-rockets almost to levels that could cause a stroke but then dives, such lability being the easily confirmed hall-mark of classic ME/CFS that was identified many years ago by Dr Melvin Ramsay ).

Bell explains that these symptoms are caused by elevation of adrenaline levels that are released in an attempt to compensate for impaired blood flow to the brain due to blood volume deficits and to problems in the blood vessels themselves, which result in the well-known (post-adrenaline-surge) exhaustion: “(The blood vessels) must be constricted so tight in the brain that little blood gets through.  Perhaps it is one of the hormones that constricts blood vessels.  Perhaps an infection of the blood vessels.  Perhaps it is an excessive sensitivity of the blood vessels to adrenaline….CFS is a devastating physiologic process that undermines the body’s energy and the brain’s cognitive ability….CFS is not…an illness behaviour for lazy people.  The consequences of this illness weigh heavily not only on the victim, but also on family, community and society”.

ME/CFS is an inflammatory disease (Pasi A et al. Mol Med Report 2011:4(3):535-540). Kennedy et al from the Vascular and Inflammatory Diseases Research Unit at the University of Dundee have reported a whole raft of abnormalities in adults (and subsequently in children) with ME/CFS that are consistent with vascular instability and dysautonomia.  These findings include an increase in apoptosis of white blood cells; raised levels of oxidative stress which can damage blood vessels and other organs; increased markers of inflammation, and abnormalities in blood vessel function (Co-Cure RES, MED: 17th May 2010).

Another pressing question must be why the media so frequently fail to report such serious pathology in ME/CFS patients and to rely so unquestioningly on the Science Media Centre to do their work for them. Where is their own intellectual judgment and journalistic skill?

Following the NIH State of the Knowledge Workshop in April 2011, Professor Leonard Jason from DePaul University, Chicago, took part in a televised discussion hosted by Llewellyn King transmitted on 8th April 2011 (The Voice of America, episode #3012) in which Jason said that patients with ME/CFS “get thrown to the psychiatrists….These are patients who are victimised by an illness and then the media further victimises them, and then the medical community also does it”.  Another contributor, author Deborah Waroff from New York, made the point that “UK patients (with ME/CFS) are probably the most unfortunate in the entire world”.

Victimisation by the media is well illustrated in the article on the PACE Trial by Adam Morris in The Edinburgh Evening News published on 15th April 2011: “If implemented, it means patients would be placed on recovery schemes, with thousands benefitting from a new regime of exercise and a ‘positive mental attitude’ ”.

This statement should be compared with the comment by Professor Paul Cheney from the US on graded exercise (made in the UK at the Invest in ME conference in May 2010, proceedings of which are available on DVD from IiME): “The whole idea that you can take a disease like this and exercise your way to health is foolishness.  It is insane”.

Media coverage of ME/CFS remains problematic; comments on the PACE Trial by Vivienne Parry written for the charity AYME (The Association of Young People with ME) published on 14th April 2011 are illustrative.

Ms Parry sits on the Council of the Medical Research Council and was awarded an OBE for services to the public understanding of science.  She is on the Board of the Science Media Centre, whose Science Advisory Panel includes Professor Simon Wessely.  The Science Media Centre itself states: “The team at the SMC is advised by a Science Advisory Panel and a Board”, which would seem to indicate a close working relationship between Ms Parry and Professor Wessely.

Ms Parry is described by AYME as a “highly respected scientific journalist” but her comments on the PACE Trial do not assist patients with ME/CFS because many of them are inaccurate:

· it is not known “for sure” that two treatments (GET and CBT) are “safe and moderately effective” for people with ME/CFS because it cannot be certain how many patients with ME/CFS as opposed to “CFS/ME” were included in the PACE Trial (“CFS/ME” being chronic fatigue in the absence of neurological signs)

· the PACE Trial was not “as rigorous a study as it is possible to have”; as a respected scientific journalist, Ms Parry will know that if a trial is not a controlled trial, it cannot be so described

· it is not quite true to say that it was carried out by “a team of experts”, since 22 of those carrying out one arm of the trial were trainee psychiatrists employed to work at the Kings College PACE Centre, London

· APT is not the same as pacing, and pacing was not studied in the PACE Trial

· people with ME/CFS do not have “fatigue as their main symptom”; they have post-extertional fatigability accompanied by malaise as their main symptom (their voluntary muscles do not work properly and are exquisitely painful after exercise)

· Ms Parry says: “There are two problems here.  One is about science.  Research is about coming up with a hypothesis and then trying to knock it down”. This is precisely why the PACE Trial cannot be considered “scientific”. Although the Investigators’ hypothesis that “CFS/ME” is exactly the same as ME/CFS and that it is a behavioural disorder reversible by CBT and GET was indeed knocked down by the results, the Investigators refuse to accept that the trial failed

· Ms Parry then says: “Long held, cherished and utterly plausible ideas are regularly demolished by evidence”. This is true, but Ms Parry fails to understand that the results of both the FINE and PACE Trials demonstrate that the Wessely School’s psychosocial model of ME/CFS is wrong and has been demolished by evidence

· seemingly with no awareness of the paradox in her comments, Ms Parry continues: “This can be incredibly disappointing but you have to move on and ask the next question, not constantly keep asking the same one in the hope that eventually you will get a different answer”.  Refusing to relinquish long held and cherished ideas about the nature of ME/CFS is exactly what the Wessely School have done for the last 25 years, and indeed they continue to do so

· Ms Parry continues: “Some people also said that the trial was meaningless because it excluded those with a neurological disease, therefore could not have contained anyone who had ME since this is a classified neurological disease.  This is a bit silly because why would you design a trial that excluded the very patients you wanted to study?”.

The answer, Ms Parry, is simple: the Wessely School refuse to accept that ME/CFS is a neurological disorder.

As another, more informed, commentator (JT) has remarked, Ms Parry’s article “is an embarrassment….The trial was not studying the neurological disease ME/CFS but people with chronic fatigue in the absence of neurological signs, or “CFS/ME”….If the Oxford criteria had been applied correctly there would be no people present with ME….People should now be aware that the results were not clinically significant, and there remains little evidence to support the use of CBT and GET in the management of ME/CFS”.

Is it not important that highly respected scientific journalists get their facts right and refrain from contributing to the prevailing media bias about which Professor Jason was so outspoken?

People genuinely cannot understand how individuals who profess to be speaking up for the primacy of science can defend, let alone promote, such a transparently flawed study as the PACE Trial.

The failure of CBT/GET is written in the numbers: even the skewed data presented and published in The Lancet show that CBT/GET are of no clinical value in the cohort studied, and certainly do not confirm that the interventions are safe and effective enough to be generalised to everyone with ME/CFS or even “CFS/ME”.

http://www.meactionuk.org.uk

To my critics

“I’m not gonna sit around and waste my precious divine energy trying to explain and be ashamed of things you think are wrong with me.” — Esperanza Spalding   (via faeriesandgypsies)

A Very British Revolution

In politics, unlike these ponies, things are never simply black and white

I live in Blue-rinse-central, Toryville. Few Tory MPs enjoy a larger majority than mine. It has been said that you could pin a blue rosette on a sheep here, and people would still vote it into power.” - Sue Marsh

… which would be hilariously funny, if it were not also so very true.

The same could be said for this area, which has had Conservative MPs (the current incumbent who’d do away with the The Human Rights Act, probably bring back hanging and the workhouse, is often seen posing with “Dave”) since records began and then some, with only a short Liberal interlude in 1906.

The local councils are much the same – except they could and probably have done from time to time – put said blue rosette on a New Forest pony.

It seems impossible that things will ever change around here, but then, the British are so famous for resisting change, then suddenly giving in.

Photo: Ian Britton

Day Nineteen: Something That Made You Smile Today

Do they make gay oven chips then?

These two make me smile most days.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Monday, 18 April 2011

The Brown Envelope

imageIt really wasn’t a very big thud as the brown envelope fell onto the mat. That sound was reserved for some part of my insides as they nervously rearranged themselves once I realised that the envelope was for me and that it was from the dreaded DWP.

At this juncture, I would point out that I know I have done no wrong: I haven’t exaggerated my claims – quite the contrary really, plus I’ve been diagnosed with yet another physically disabling and degenerative disease – with symptoms that are already severe - since I last made any claims.

My circumstances haven’t changed, I still can’t work, (I haven’t even broken the law against enjoying myself), but thoughts of dread still cross my mind, as I muttered, “Oh, no …” to myself, as I began to open the envelope.

A call had to be made to my DWP office to check my entitlement last week, in order for me to be reimbursed travelling expenses to a hospital visit. Had this sparked a review, I wondered. Had I been called up for the reassessment to be shifted from Income Support (on the basis of my incapacity), to ESA?

All manner of things raced through my mind, just as assuredly as, we are told, our whole lives play out in moments of danger or near-death.

Kaliya Franklin remarks hereI sobbed down the phone to a friend in impotence and sadness that a Britain, once so great was putting this kind of pressure on it's own citizens …”

And that is how we are being made to feel: just the sight of that envelope filled me with enough dread for it to be very unpleasant and stressful.

As it turned out, all it was telling me was that the rates of my Disability Living Allowance benefits have gone up from April 13th and I’ll be getting more money, so I can rest easy … that is, until the next brown envelope arrives.

The real world

“Studies show: Intelligent girls are more depressed, because they know what the world is really like” - Emilie Autumn

This, I am certain, is the truth. (via)

Day Eighteen: Favourite Board Game

Modern_backgammon_set

Backgammon and I’m not bad at it, if I say so myself.

If anyone knows of a good quality software (compatible with Vista) that I can play against the computer (not online with other players), let me know.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Sunday, 17 April 2011

Animals explain why Alternative Vote better

Call me an old cynic if you like, but the fact that the Tories are even allowing us to have a say on the matter, tends to make me think that AV HAS to be a bad idea. Which may be a very simplistic way to look at it and make a decision, but it’s one that I have found perfectly reliable for many years.

Then I saw this video, which makes AV look like a good idea. Which makes me confused and I don’t like being confused. How do I vote on May 5th?

Via Liberal Conspiracy

Links of Interest (weekly)

Posted from Diigo. The rest of my favorite links are here.

Day Seventeen: A Childhood Picture

image

Shame they have to grow up really.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Saturday, 16 April 2011

Day Sixteen: Future Tattoos

image

Tattoos = pain and I already have enough of that, so I’ll just take these tribal tattoos if I may, with the bloke still attached to them, thank you.

(This is one of a series of posts following this 30 Day Challenge, which really isn’t at all challenging. It’s also quite adolescent, but is just meant as fun.)

Friday, 15 April 2011

A Natural Anti-Inflammatory

White Willow BarkBy Teena Whatison

Most common types of pain are caused by inflammation. Inflammation is the response from tissues that have been injured and is actually a process that helps the body heal itself. However, inflammation can cause a great deal of pain. To relieve most types of pain caused by inflammation, it is generally recommended to take an anti-inflammatory drug such as ibuprofen. However, taking these pain killers on a regular basis can lead to stomach pain, nausea and in some cases long term kidney or liver damage. For chronic pain sufferers, it is strongly advisable to find a natural anti-inflammatory to help with pain management.

Relieving Inflammation with Ice

Ice is is both very effective to soothe inflammation and is easy to find. Most people don't even think twice about applying ice to a sprain or bruise right after the injury occurs. If you have ever wondered why people do this, it is because ice acts as a natural anti-inflammatory and helps to soothe inflammation and reduce swelling. This helps to reduce pain and to speed up the healing process. For immediate pain relief, the ice is obviously very cold and numbs the area which helps to relieve pain right away. When using ice to relieve inflammation it is advisable to apply it until the area is numb (generally 20 minutes) and then waiting to apply it again after the area is back to normal temperature.

Natural Anti-Inflammatory Herbs

There are a number of herbs that can be taken as a herbal supplement to fight against inflammation and relieve pain. When taking these herbs as a supplement it is recommended to take them on a daily basis. The effects may not be noticed for up to 1-2 months. Here is a look at some of the most commonly found and most effective natural anti-inflammatory herbal supplements:

  • Ginger should be taken 1-2 times a day with a meal. Each capsule should contain 500 to 1,000 mg of ginger.
  • Turmeric is found in mustard and curry. It works very well to relieve inflammation and is recommended for a number of chronic conditions such as arthritis and tendonitis. It can be taken three times per day in 400 to 600 mg dosages.
  • White Willow Bark has been compared to aspirin and is works well to fight inflammation. Recommended dosage is 50mg three times a day.
  • Boswellin is another natural anti-inflammatory herb that can be taken twice a day. It is especially useful for treating pain from fibromyalgia.

Please note that the dosage amounts provided above are generally what is recommended by most health professionals. It is highly recommended to read the labels on the supplements you purchase to see the correct dosage for that particular brand.

Natural Anti-Inflammatory Foods

Chronic pain sufferers may notice relief of their daily pain after adding some of these natural anti-inflammatory foods to their diet:

  • Foods that are high in Omega-3 such as fish, nuts and seeds (especially flax seed) have been known to have anti-inflammatory properties.
  • Oils such as avocado oil or extra virgin olive oil may also help with pain caused by inflammation.
  • The tastiest foods that have been known to help with inflammation would have to be papaya and blueberries.
  • Green tea can also help with inflammation along with all of the other health benefits that it offers.

Natural Anti-Inflammatory Remedies

Related Posts Plugin for WordPress, Blogger...
^ Top