tag:blogger.com,1999:blog-33209421694536535072024-03-13T22:28:38.583+01:00Wood of ThornsI have never been called a ‘Beauty’ but my chronic illness put up a barrier between me and the world every bit as tangled and high as Briar Rose’s thorn hedge. Being struck with M.E. really can feel like being ‘cursed' – one day I was enjoying a perfectly normal life, the next poof! it vanished.
Even after nine years, trying to manage and learn about my condition often feels like trying to hack my way through a tangled, thorny mess.
And of course...I do sleep a lotslothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.comBlogger73125tag:blogger.com,1999:blog-3320942169453653507.post-84708651662033831562016-11-17T17:30:00.001+01:002016-11-17T17:30:15.490+01:00Down With The SicknessBriefly touching base here (and hoping I remember how to post!) to recommend a new blog begun by a friend.
Down With The Sickness
is Good Stuff, give her a visit!slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-19754737560523175922013-09-10T18:45:00.001+02:002013-09-10T18:45:50.089+02:00Eye Movement Dysfunction in M.E. PatientsInteresting results from the trial I took part in last year.slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-10534797822083428912013-08-06T12:52:00.003+02:002013-08-06T14:20:57.643+02:00Label-ismLink being passed around on twitter to this article. It's all about how some people re-designed the static 'disabled' symbol used in parking bays, etc, so that it looked like this instead:
The claim is made that it changes the perception of the disabled.
Indeed it does. It changes it even further towards a perception that all 'proper' disabled are self-propelling slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-80068359887583568592013-07-30T13:36:00.001+02:002013-07-30T16:44:03.658+02:00Any morning, 3a.m.
Me again, having the urge to write here again for the first time
in a long while. It almost goes without saying that I'm angry and sad. Who
wouldn't be, on a day where a UK Court of Law decides that discrimination
against disabled adults can be legal?
Why did I stop writing in the first place?
Partly because the blog went in the direction of trying to keep up with
scientific state-of-play on slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-49375434563641669452012-06-17T13:28:00.000+02:002012-06-17T13:28:23.114+02:00Sitting in the MudThis weekend I tried to go to a music festival for the first time since beginning to use the wheelchair. And this happened.
Friday:
Ground beginning to be muddy on arrival but navigable in the chair on arrival and departure.
Went to the Catton stage tent, and were helpfully shown to the disabled ‘safe area’ by a steward who was marking it out by spraying paint on the floor. Four or five of slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com1tag:blogger.com,1999:blog-3320942169453653507.post-31905932886890558612012-04-03T13:29:00.003+02:002023-08-15T16:08:36.082+02:00Mentally YoursPhysical or mental? A perspective on chronic fatigue syndrome
is an excellent paper. I found it helpful because it looks at why the 'mental or physical' diagnosis matters, as things stand today in the world of medicine, benefits, insurance and public perception. I am someone who absolutely believes the mind and body are linked and affect one another. I accept that all chronic slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-76528610714764654832012-03-22T11:11:00.001+01:002012-03-22T11:16:40.232+01:00'D' is for...near DespairI have often thought that I would only take up writing here again if provoked by some hopeful development, or some great anger. But today, I am too deeply sad to even be angry. And hope seems so distant as to be a joke.
In this week when I watched the beginning of the end of the NHS, in this year when government attacks on the disabled have bewildered and terrified sick people, some to slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com1tag:blogger.com,1999:blog-3320942169453653507.post-51221194173363940192010-12-06T19:17:00.000+01:002010-12-06T19:17:04.637+01:00Washington Post Ad pdfAnd here's a pdf of the ad itselfslothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-66295768970630300112010-12-06T12:18:00.001+01:002015-02-22T22:31:01.268+01:00Press release for Washington post ad
A big 'wow' to the MCWPA for bringing this off.Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post
--Possible New HIV-like Retrovirus in Blood Supply--
CORAL GABLES, Fla., Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-88366297304557884292010-09-08T17:32:00.000+02:002010-09-08T17:32:11.464+02:00DANCING WITH THE SANDMAN: So Near Yet So Far...DANCING WITH THE SANDMAN: So Near Yet So Far...slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-56152044945212770592010-09-08T13:34:00.001+02:002010-09-08T13:40:22.250+02:00A letter to my MP[*Please note - the awesome SMC query letter that I attach to the bottom of this was put together by Chris Douglas of the Facebook group XMRV Press Releases .]
Dear Andrew
Please excuse this being an email rather than a 'proper' letter - there are a few web links in it, and I thought they would be easier to follow from an email!
I'm writing to you as my MP on one broad subject, and one slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-38683506509515050422010-09-07T11:46:00.002+02:002010-09-07T14:41:53.808+02:00First brick out of the Wall of Silence?This morning, the UK woke up to actually hearing sense talked about ME on national radio and the BBC News site.(I've posted the full article below, as links have been a little hinky recently.)
A link-heavy and very helpful account of this research can be found here on the ME Research UK site.
A team from Dundee University lead by Professor Jill Belch has found clear abnormalities in the white slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com2tag:blogger.com,1999:blog-3320942169453653507.post-77512825898665363082010-09-03T17:02:00.000+02:002010-09-03T17:02:42.022+02:00When people are nice and well-meaning but you want to strangle them anywayBig family gathering to celebrate mum and dad's Golden Wedding Anniversary last weekend. Still recovering but the spoons were worth it.
Except when this happened. Which it did four or five times during the afternoon:
Old friend of the family: So what are you doing these days, Jane?"
Me: Well, not very much really-
OFOTF: Oooooooh, sounds very nice!
Stop. Please, please. For the love slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com1tag:blogger.com,1999:blog-3320942169453653507.post-11871856482168834492010-09-01T17:41:00.000+02:002010-09-01T17:41:49.065+02:00DANCING WITH THE SANDMAN: Memo to NICE re: CG53 revisionDANCING WITH THE SANDMAN: Memo to NICE re: CG53 revisionSorry everything is simple links at the moment - all my spoons were eaten by helping plan and hold my parents' Golden Wedding celebrations. What passes for normal service around here will hopefully be resumed very soon.That said, this is a very important link. NICE should be deciding soon whether they will properly review the guidelines slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-60632134531787105112010-08-23T15:42:00.000+02:002010-08-23T15:42:23.395+02:00DANCING WITH THE SANDMAN: Hot off the Press from NIH News: Scientists to discuss research on XMRV in blood, chronic fatigue syndromeDANCING WITH THE SANDMAN: Hot off the Press from NIH News: Scientists to discuss research on XMRV in blood, chronic fatigue syndromeslothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-19790366089342660572010-08-16T21:13:00.001+02:002010-08-16T21:14:23.198+02:00Where's the Benefit?: Guest Post: Benefits Who?Where's the Benefit?: Guest Post: Benefits Who?
Cogently-written article on the spectre of forced medical treatment.slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com1tag:blogger.com,1999:blog-3320942169453653507.post-41372068007834942422010-08-14T12:57:00.001+02:002010-08-14T13:01:03.754+02:00DANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime BasisDANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis
In a letter to Andrea, the Dept of Health have described ME very clearly and plainly as a 'relapsing condition'. Since mental disorders cannot cause relapsing, remitting conditions, may we hope the treatment of ME will now be 'brought in line with' the treatment of other relapsing slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com1tag:blogger.com,1999:blog-3320942169453653507.post-42079300370287950132010-08-09T16:45:00.008+02:002023-08-15T16:14:00.576+02:00Un(house)bound!
So *excited bounce* I've done it. Bought a power wheelchair. It's due to arrive tomorrow.
Knowing my depressive self as I do, I've been waiting since choosing it on Friday for a wave of 'ain't it awful' to break over me (after all, I'm still - just! - at the age where I'd hoped to be buying pushchairs not wheelchairs) but it hasn't happened. I'm feeling 100% positive about it and can't wait to slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com7tag:blogger.com,1999:blog-3320942169453653507.post-52511058466689536602010-07-28T18:45:00.003+02:002013-08-06T14:09:07.876+02:00Belief and bullying
This well-written article by Doctor Neil Abbot of ME Research UK appeared on the HeraldScotland website today.
The writer asserts that diagnosis is usually only the start of an ME patient's problems, and talks with piercing accuracy about the two 'black holes' facing us - lack of credibility, and lack of joined-up, effective treatment. I have emphasised a couple of points thatslothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com3tag:blogger.com,1999:blog-3320942169453653507.post-75271371216577649212010-07-10T14:35:00.000+02:002010-07-10T14:35:23.275+02:00Papers and panicsSo, as Elle mentioned in her comment yesterday, we may soon get the FDA study after all (details below).
Yesterday I was talking to Anth about how much the psych school attitude to ME reminds me of a witch-hunter's attitude to those accused of witchcraft - namely, if you protest your innocence, to a witch-hunting mind that proves your guilt in their looking-glass-world mind. With slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com1tag:blogger.com,1999:blog-3320942169453653507.post-40218687882858516272010-07-10T12:30:00.000+02:002010-07-10T12:30:15.706+02:00Somatic medicine abuses psychiatry - and neglects causal researchToday's post is the low-energy option of a link again. And because it's a weekend, I've given you a link to a long, cool, clinical read. I found it fascinating, especially the sections on epidemiology and statistics.
Somatic medicine abuses psychiatry
— and neglects causal research
is an article I found, via Dancing With The Sandman. It is copyrighted by the author, Per Dalén.&slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com1tag:blogger.com,1999:blog-3320942169453653507.post-60346467450030000652010-07-09T14:00:00.002+02:002010-07-30T14:25:10.314+02:00And they call US crazy....Article in The Independent. On XMRV and the paper that was pulled. Finally the truth is getting some publicity in the UK,you think? Sorry to disappoint you...
This is pure Science Media Centre stuff. Sly dig at ME patients who believe in 'conspiracies'. The ridiculous, discredited and downright fucking dangerous assertion that CBT is
a psychological approach to treat people with the slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com4tag:blogger.com,1999:blog-3320942169453653507.post-50583884121961501182010-07-06T00:17:00.000+02:002010-07-06T00:17:43.904+02:00Shaw, Sharpe and SensibilityStill running low to empty on the spoon front, right when I want to write about, XMRV, Second Life, illness and martial language and...well, stuff.
So all I want to say at this moment is - go and read
THIS
Brilliantly written, and as true today as back in 2005 when it was written, unfotunately.slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0tag:blogger.com,1999:blog-3320942169453653507.post-84274972810708064532010-06-27T15:30:00.003+02:002010-06-27T15:43:39.766+02:00Eyore-ish on XMRVMy feelings on the news that a second serious study has backed up the WPI results for XMRV remain mixed. In this I seem to find myself in the minority amongst a huge outbreak of joy. After all, the news is good, right?
So why I am feeling so uneasy about it?
Well, for one, this wasn't an official announcement. It wasn't publication of the study. It was a leak, saying that such results would be slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com5tag:blogger.com,1999:blog-3320942169453653507.post-86306013902007778892010-06-25T16:27:00.000+02:002010-06-25T16:27:12.342+02:00And who, exactly, decided this?Reposted from Stonebird . No, I'm not happy that an association firmly in the GET camp despite all evidence for the damage it does, is now calling itself'the sole training provider for all NHS staff in "CFS/ME". How long is OUR money going to go on being used to spread ignorance and downright untruth to medical staff?
BACME ?? Who ??
Greg Crowhurst
(permission to repost)
BACME : slothgothhttp://www.blogger.com/profile/01847029827542675513noreply@blogger.com0