Professor Hooper's Response to The Observer's Article About Professor Wessely's Allegations of Death Threats

Professor Malcolm Hooper has submitted an article to the Observer in response to the article by Robin McKie "Chronic Fatigue Syndrome Researchers Face Death Threats From Militants", published on Sunday the 21st of August 2011. He has given permission for this article to be made public, and I decided to share it here, as what he has to say is so important - and he has responded so concisely to the most recent rush of abuse against ME patients in the UK. (Please note, the article posted below is the extended article. Professor Hooper first wrote a shorter letter to the Observer, at the request of the readers editor at the Observer, which he was originally told would be published - but then they decided not to do so. You can read this letter over on the NICEGuidelines Blog. :)

I haven't blogged about all this stuff going on in the media recently, basically because I just haven't had the energy to do so. I wish I could say that I haven't let it affect me negatively, but the truth is, when this attention in the media is so constant and so well targeted, and so cruel, it's really hard not to let it get to you. I'm personally feeling just really worn out by it all, emotionally. I really don't understand why these so called journalists are only giving one side of the story, and seem to do absolutely no research whatsoever before publishing these articles. It seems like they are just 100% buying into the lies they are being fed, purely because it makes good sensational headlines.

I hope one day that ME patients will receive a formal apology from the NHS, and the media, for the treatment we've had to endure for so many decades now ..... But I'm not holding my breath!!




----------------------------------------


Professor Hooper’s response to the Observer article about Professor Wessely’s allegations of death threats:
Professor Hooper | Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
25th August 2011

No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21^st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years. 

No matter what the degree of provocation, it is indefensible to liken people with myalgic encephalomyelitis (ME) to the Animal Liberation Front extremists. This will create a further tidal wave of loathing against them. It is an inexcusable attack on the whole ME community, not just on those few people who may have behaved irrationally.  It might be thought that, of all people, psychiatrists would know how to recognise and deal with unbalanced behaviour instead of exploiting it.

Wessely says he is concerned that such behaviour is putting off researchers but it is he who is putting them off by his endless purveying of so much negative publicity about people with ME. He perpetuates the dismissive, often contemptuous, attitude of many healthcare professionals toward those with the disease.

The problem is that although these scientists claim to be studying patients with ME, they are studying people with chronic “fatigue” (ie. chronic tiredness) but then claiming that their results apply to those with ME; this has resulted in a lack of appropriate NHS medical services for those with ME and in incalculable harm and distress to patients and their desperate families. 

Even though the World Health Organisation has classified ME as a neurological disorder since 1969, the Wessely School teaches that it is not a neurological but a psychosocial (behavioural) disorder.

There are about 250,000 ME patients in the UK.  By comparison, there are about 83,000 people in the UK suffering from multiple sclerosis, yet the far larger numbers of ME patients coping with an equally serious neurological disorder are not only denied both medical and social support but are ridiculed, mocked, disbelieved, derided and abused by those charged with their medical and social care. 

Dr John Greensmith noted in a letter to The Scotsman (when Wessely was making the same claims of vilification by patients seven years ago): “It is deplorable if he has been so treated, no matter how controversial his views.  It is instructive, however, to examine how Professor Wessely has raised passions to this level of fervour by, perhaps, more than any other single individual, being responsible for making the area as controversial as it is”.

There has been a constant drip-feed of denigration of patients with ME and a dismissal of ME as an organic disease over the last quarter of a century by Professors Simon Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by psychiatrists (named in Hansard in December 1998 as the “Wessely School”).

Most of them work for the medical and permanent health insurance industry.  The industry is panicking because it stands to lose millions if it has to pay out for a severe life-long physical illness whose worldwide incidence appears to be escalating out of control.  In 1994, Wessely went on record about the industry’s concerns: “By 1990 insurance and disability claims (for ME) were doubling every year”. There is plentiful written evidence that the Wessely School advise their insurance industry paymasters that ME is a “functional” (ie. non-organic) disorder, which is to the financial advantage of the industry, as functional disorders are excluded from cover.

Wessely and his colleagues are also advisors on ME to Government Departments of State (and Wessely’s wife is Chair of the Royal College of General Practitioners); as a result, people with ME are specifically targeted by the Department for Work and Pensions, making it difficult for them to claim State benefits, with the financial support necessary for basic survival being ruthlessly withdrawn. Many very sick and destitute ME patients have had no alternative but to commit suicide, rates of which in ME are known to be higher than average (sadly, a fact does little to mitigate the charge that they were “mental malingerers”).

The Wessely School’s blatant financial conflict of interest has been roundly condemned by a group of senior parliamentarians including the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians.

The Wessely School’s endless assertions that ME does not exist except as an aberrant illness belief by those who are seeking secondary gain (an assertion for which there is not a shred of evidence, as the many doctors, nurses, medical scientists, lawyers, teachers, and others who have lost their valued careers, salaries, homes, marriages and even families because of ME will readily confirm) has created a climate of disgust for patients with ME, giving rise to such banner headlines as “GPs despise the ME generation” published in the medical trade magazine “GP Medicine”. Since the 1980s, they have made a point of mocking and denigrating sufferers from ME in a way they would not dare do about patients with multiple sclerosis or other neurological disorders and this has been fed to and reflected in the national media.

The Wessely School insist that they can cure ME by “cognitive restructuring” (ie. brain-washing patients into believing that they do not suffer from an organic illness but from wrong illness beliefs) and by forcing them to ignore their symptoms and engage in a programme of incremental exercise  (one MP suffering from ME collapsed and died leaving the House of Commons gym, having been told to exercise back to fitness).

What is ME?

ME is a chronic, acquired neuroimmune disorder that affects every bodily system, not only the neurological and immune systems but also the endocrine, cardiovascular and respiratory systems as well as the musculoskeletal and gastrointestinal systems.

There is evidence of widespread, chronic inflammation and of serious problems with the blood vessels in both adults and children.

The muscles of people with ME have been shown to take much longer to recover from minimal exercise.  Direct impairments in oxygen delivery have been clearly demonstrated. Cardiac output in ME patients has been shown to barely meet metabolic demand, so it is no wonder that patients feel – and are – extremely ill, with profound incapacity and nausea; many patients cannot stand unsupported and often have difficulty maintaining their balance. 

There are more abnormal genes in ME than in cancer: there is compelling evidence linking ME with exposure to environmental toxins and chemical warfare agents. Gene expression research has demonstrated 16 genes as having an expression profile associated with ME.  Genes affecting the immune system and the functioning of muscles have been shown to be abnormal. A neuronal component was identified that is associated with hypomyelination of the central nervous system. The researchers specifically pointed out the association of organophosphates (which include household pesticides) and chemical warfare agents with the damaged genes.

Notably, after one of the researchers who discovered these acquired (not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly criticised the psychiatrists who control funding for ME research at the Medical Research Council, he lost his tenure and his contract was not renewed.

He was not hounded out of his research by patients with ME, but by those whose mission seemed to be to ensure that his voice was silenced, leaving the way open for more dismissal and disparagement of those battling a devastating disease.

At a press briefing in the United States on 3^rd November 2006, ME was described by Anthony Komaroff, Professor of Medicine at Harvard and a world-renowned ME expert as “this terrible illness”.

People die from ME and UK coroners have recorded it as a cause of death. 

Evidence from autopsies of ME patients is chilling: there is evidence of oedema, inflammation in 75% of the spinal cord, damaged arteries, congestion of the liver and spleen, ischaemia of the bowel, rhabdomyolysis (the breakdown of muscle fibres with release of muscle fibre contents into the circulation, some of which are toxic to the kidney), and degeneration of the brain. The Medical Director of one US support foundation commented: “Every time you look closely at someone with this disease, you see immense suffering.  There appears to be no limit as to the human toll that this disease is capable of exerting on patients”. 

However, when in 2002 the UK Chief Medical Officer publicly stated that ME should be recognised alongside disorders such as multiple sclerosis and motor neurone disease, the British Medical Journal quoted Professor Michael Sharpe responding by saying that just because the CMO says something, it doesn’t mean that doctors will pay any attention.

The Wessely School’s published views about people with ME

Since about 1987 the Wessely School have consistently rejected the biomedical evidence of serious organic pathology in ME.

In 1990 Wessely asserted that ME exists “only because well-meaning doctors have not learnt to deal effectively with suggestible patients”.

That same year he wrote in a medical textbook:  “The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”.

In 1991, he cited medical comments made between 1880 and 1908 on patients with neurasthenia, with the clear implication that such descriptions apply equally well to today’s ME patients: “always ailing, seldom ill; a useless, noxious element of society; purely mental cases; laziness, weakness of mind and supersensitiveness characterises them all; the terror of the busy physician”.

In 1992 the Wessely School directed that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms; that same year, Wessely went on record about his intention to “eradicate” ME.

In 1994 ME was described by Wessely as merely “a belief” and a “myth” (“I will argue that ME is simply a belief, the belief that one has an illness called ME……I will argue that this line here (pointing to a slide)represents…the line between real and unreal illness”) and he openly named and mocked a seriously ill ME patient in a lecture; that person is now dead. 

In 1996, under the guise of a Report from the Joint Royal Colleges of Physicians, Psychiatrists and General Practitioners, the Wessely School recommended that no investigations should be performed to confirm the diagnosis.  (This advice to doctors was re-stated in the 2007 NICE Clinical Guideline on “CFS/ME” in which the Wessely School were instrumental.  This means that investigations such as a comprehensive immune profile cannot be ordered in the UK  -- even though one specific immune test always corresponds to disease severity in ME patients -- nor can patients be sent for fMRI scans that show clear evidence of hypoperfusion in the brain, nor can doctors request SPECT scans that show reduced blood flow through the brain stem in ME patients in a particular pattern that to date has not been found in any other disease process).

In 1997 Professor Michael Sharpe referred to ME as a “pseudo-disease diagnosis”.

In 1999 Sharpe said about ME patients: “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service”.

Between February and April 2002 Wessely was involved with a poll of “non-diseases” carried out amongst doctors by the British Medical Journal: along with big ears and freckles, the poll found ME to be a non-disease that is best left medically untreated.  As a result, patients with ME were struck off their GP’s list, one extremely sick person being told scathingly “This practice does not treat non-existent diseases”.

For those who want or need to find out about the published organic pathology in ME, a summary of the biomedical abnormalities can found in Section 2 of “Magical Medicine: How to Make a Disease Disappear” (http:///www.meactionuk.org.uk/magical-medicine.htm) and those who want a fully referenced account of what the Wessely School and the insurance industry are really up to can read the rest of the 442 page report.

The Wessely School’s dismissal and rejection of the biomedical evidence on ME has continued unabated. It was not the fact that UK scientists such as Professor Myra McClure failed to find evidence of the retrovirus XMRV found in ME patients by US researchers that caused such an eruption of anger within the ME community: it was the utterly triumphant and contemptuous comments of certain of those scientists whose studies failed to replicate the original XMRV study published in Science (2009:326:585-589) that so incensed some people with ME and the medical scientists and clinicians who are striving to help them.

Patients with ME know what Wessely really thinks about them, as his published views leave no room for doubt or conjecture (for illustrations of his descriptions of ME/CFS patients, see “Quotable Quotes about ME/CFS”: http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf).

The views of the Wessely School about ME have repeatedly been shown by medical scientists of international repute to be completely wrong: the recently published International Consensus Criteria for ME produced by 26 world experts from 13 countries points to widespread inflammation and multisystemic neuropathology, consistent with the WHO classification of ME as a neurological disorder, of which the cardinal symptom is post-exertional nalaise. The authors state: “Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome, is a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying  pathophysiology  produces measureable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology.”

What is astonishing is that no NHS clinician has the autonomy to regard ME as a somatoform disorder because the WHO classifies it as a neurological disorder; the Department of Health has confirmed in writing that: “The ICD-10 is an NHS Information Standard….The NHS has a long history of using the ICD.  There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added)….Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”.   

Not only the Wessely School themselves but also many GPs and NHS neurologists are in breach of that mandate:  in 2010, 84% of neurologists questioned stated that they do not believe that ME exists as a neurological condition.

Who is abusing whom?

For the Wessely School to ignore the scientific evidence that ME is a biomedical disorder is abusive of patients with the disorder; for them to advise the DWP decision-makers and to train ATOS examiners that ME is a mental disorder is abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious and significant medical disorder with reproducible multiple systemic abnormalities is abusive.

This widespread abuse of ME patients continues unabated in the UK.

Robin McKie implies that it is these scientists themselves who are being abused by the very patients they are trying to help.  If this is true – and if it is corroborated by the police and is not another public attack on people with ME so often used by the Wessely School in the past when yet more research appears that vitiates their own beliefs -- it is an entirely unacceptable state of affairs and must be condemned without reservation.

However, responsible journalists should exercise the requisite journalistic neutrality when reporting a “story” and report the whole issue, not just regurgitate uncritically what they are fed by those with well-established vested interests. McKie would do well to redress the balance by reporting the presentation by Catriona Courtier at the Royal Society of Medicine meeting in the “Medicine and me” series on 11^th July 2009 in which she emphasised the scandalous situation faced by ME patients in the UK:

“Over the twenty years I have had this illness, what has really bedevilled the situation of patients with ME has been the belief, which has been persistently promulgated, that we are suffering, not from a physical illness but from an illness belief. This is at the root of all the problems we experience: the lack of resources, the hostility and disbelief from some doctors, the ignorance and disinterest in our symptoms, the ineffective treatments, the harmful treatments and in the very worst cases, the imposition of psychiatric treatment against the patient's wishes.

“Those who promulgate the view that ME is an illness belief have undermined the mutual trust and respect that should exist between doctor and patient. They have done a great disservice to both patients and to the medical profession.

“I began by describing the severely affected as the weakest among us. In some ways they are the strongest… to live for many years with an illness like ME is a huge feat of human endurance and courage but is seldom recognised as such. People with ME at all levels deserve to be respected. They deserve to be listened to”.

That patients with ME continue to be neither listened to, appropriately investigated nor correctly cared for but abused and effectively abandoned is believed by many to be the shameful legacy of the Wessely School.

Notes for Editors

1.      All the above statements can be substantiated by literature references.

2.      Much other information has been omitted purely for reasons of space; there are many harrowing stories, as documented by Natalie Boulton in her book “Lost Voices” and her DVD “Voices from the Shadows” that is to be shown at an international film festival in the autumn.

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Professor Hooper's Response to The Observer's Article About Professor Wessely's Allegations of Death Threats

Tweet

If That's What it's Like to be 'Normal', I Want it!!!

I can't believe it's taken me almost 3 weeks to update you guys on my appointment at the Women's Hospital! Yikes! I've been basically floored (well, more accurately, 'bedded' - but since that sounds rather um, rude, I'll move swiftly along....! ) by having to go out. As those of you who are friends with me on Facebook may know, my appointment fell on the day after the first night of (ridiculous & pointless!!) rioting in Liverpool. The areas all around the hospital, and the area I live were the worst affected in the whole city. Overnight, we were concerned that we may not be able to safely reach the hospital, but by morning, the streets were cleared, opened, and settled again, (though there was lots of broken glass, fire engines, and many cars had obviously been vandalised or set fire to) and we managed to get to the hospital with no problems at all. Phew. (Can I just say, I was really proud of the way our city reacted to the riots - there was a citizen organised clean up operation set up on facebook as the violence broke out on the first night, and hundreds of people arrived first thing in the morning to clean up the streets! There's a real sense of community in Liverpool, which most people from outside our city would be surprised by, given our unfair reputation!)

My Orthostatic Intolerance (specifics as yet undiagnosed, but almost certainly POTS) poses quite a problem nowadays when I have to leave my bed for any length of time, because standing and sitting cause my blood pressure and pulse to rise rapidly to fairly dangerous levels. The hospital is only a few minutes away by car, but factoring in the sitting I would need to do at the hospital, the only safe way to get there is to lie down in the back seat of the car. (We were unable to get an ambulance, because my GP didn't send the hospital the information they needed until the very last minute, despite several attempts by the hospital to contact her, meaning that the appointment wasn't confirmed until the Friday, leaving no time to arrange it!! Thankfully, my dad agreed to drive me there and back, despite him having to also take my mum to and from the Royal for her Velcade treatment on the same day!) It doesn't feel especially safe being in a car with no seatbelt, and I get car sick ... but I'm left with little choice in the matter.

The staff at the hospital were all really lovely, & amazingly even found a spare room/exam table for me to lie on during the hour I was waiting to be seen. Uncomfortable, but at least my pulse stayed relatively stable, and it was much quieter than it was in the large waiting room. They even turned the light off for me. (Light intolerance and the resulting pain in my eyes was definitely the worst thing about the trip, actually, which surprised me somewhat! I had sunglasses once I got there, and I wore an eyemask in the car, but honestly I felt very embarrased about it all!) I also find that the effort of getting ready to go out, being driven to the hospital, wheeled to the unit in my chair, dealing with all the light & noise & sensory overload ... then lying for an hour on the hard exam bed, did really slow down my cognitive function very significantly, and I was finding it really hard to think and communicate by the time my appointment actually came around. I think my speech was quite slow and slurred too, which was embarrassing and frustrating. I'm just glad Anna was there to communicate for me when my own words failed!!

I saw the clinical nurse specialist, who was very nice and very respectful of my ME & the issues it causes, though it seemed like she was rather surprised at how badly I was affected. (I'm sure she doesn't get many patients who can't handle light, lol) She took a history, did an exam etc, then I had some bloods taken. I'll have to go back once the results come in - it probably won't be till October, which is ok by me because I have the Cardiology appointment in September, and I'm not sure I could handle two appointments in one month!. The Nurse Specialist thinks it's more than likely that my symptoms are being caused by the PCOS being totally out of control, but there's a chance other things are going on. (I have an increased risk of various cancers, for instance)

I would normally have had to have a scan at a separate appointment, but I was brave enough to ask if there was any chance at all that I might be able to have one that day. She rang round to the xray dept on the off chance, and amazingly, they said 'yes, come straight round and we'll fit you in'!! Apparently that literally never happens! I think they had, had some cancellations because of the riots. (So at least that stupid situation had SOME use then! Lol!) I was so relieved they were able and willing to fit me in, because even though it made that particular appointment longer, it means one less outing over the next few weeks, which will make a massive difference to the potential for short or long-term relapse caused by all this activity!!! One of the big concerns, and reasons why I had to get a scan, was that I may have developed Endometriosis, which is always a possibility because of my PCOS, but the scan didn't show any obvious signs of that according to the radiologist doing the scan, so that's one huge weight off my mind!

However, kind of scarily for someone in my situation, there's a chance I may have to have a Hysteroscopy, depending on the results of the various tests I had at this appointment. The nurse was aware of the risks of my having a general anaesthetic, (The procedure she has in mind would normally be done under general) and said there are various options we could look at - none of them very pleasant, all of them pretty scary (!) - so I really don't know what I would do about that if it's necessary. I'm gonna have to do some research before my next appointment so I know the implications of those different options. (Anyone know much about these kinds of issues for ME patients??) Honestly I think I just have to hope upon hope that she decides it won't be necessary, because I don't know if I could risk a general anaesthetic, and without it the procedure would be pretty horrible. Either way, even as a day patient, it could have huge implications for my ME, as well. Even looking at just the thought of being in the hospital for a full day is pretty overwhelming, and would be incredibly difficult for me for so many reasons ... and that's without even going into the procedure itself, and the recovery period. However, I can't do much about it ... if it does end up being necessary, then I'll just have to cross that scary bridge when I come to it!

All in all it, the visit went about as well as it could have, I think. The unit really did try to accomodate my needs, which made things so much easier - and was a really nice change from the norm! The nurse was really shocked when I told her about the situation with my GP not making home visits, etc. (This was after she had seen the rather shocking list of my symptoms, etc) Everyone was just so nice!!! I just couldn't stop thinking, 'Is this what healthcare is like for 'normal' people?? Being respected and taken care of. Treated with kindness and compassion. Your needs being heard and effort being made to accommodate them. Not having to fight for every little thing you need. Not feeling like you are just an irritation to the staff. Not feeling like you have to fight to get people to even believe that you're really ill. Not having to justify & explain yourself & your illness & disability. Just being accepted and validated as a human being who is genuinely very ill. The truth is that the comparison between this experience, and the now normal-to-me experience of having to constantly fight a system which is doing it's best to make you feel like you are nothing, nobody ... it's just utterly shocking. It really highlights just how bad things are for me ... for so many of us. It seems really sad to me, when I think about it, that it would be a surprise - a shock even, for someone when they are simply treated with a normal amount of respect and compassion!

I've definitely had a rise in symptoms since the appointment, my pain especially has been pretty bad, and I've been feeling sort of numb, cognitively - but none of it has been as bad as it could've been had I not been able to lie down at the hospital. I feel like that made all the difference between it being extremely difficult, and an absolute nightmare! I feel it also made a difference that I rested so much in the couple of weeks before this appointment, and I'm going to have to keep to that over the next couple of months too, with a minimum of two more appointments to come. (It's unbelievably frustrating though to not be able to be online and communicate with friends!!!) Now I can only hope that the cardiology unit I have to go to next month will be as understanding & helpful!!

It was very strange going back to the hospital where I used to work as a NICU nurse. It's been so long since I was last there, and it all felt slightly unreal, like some kind of weird out of body experience! (Probably not helped by the kind of tunnel vision effect I got because of the combination of sensory overload & cognitive 'slowness'.) It really does feel like the me who was a nurse was a different me ... someone I barely even recognise anymore. A different lifetime and a different me. Different ... yet, somehow, at the same time, still exactly the same!

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

If That's What it's Like to be 'Normal', I Want it!!!

Tweet

Book Review : The Hunger Games

The Hunger Games by Suzanne Collins
My rating: 5 of 5 stars

Well, for those of you wondering what I'm doing when I'm not able to be online, the answer is mostly, reading. (Right now, I can only manage audiobooks, but that's fine since I've really got into this method of reading, recently, and I can get *most* of the books I want to read, in that format ... though I suspect that at some point I'm going to want to buy a paper copy of this trilogy, preferably a really nice boxset!! ;) ) I loved this book so much that I actually got around to writing a short review on Goodreads, where I usually just give a star rating. And I loved it so much that I decided to share my review with you guys too, despite the fact that it has nothing to do with my usual subject matter here!

There's no real spoilers here, so if you haven't read the book, you're safe to read on. :)

The Hunger Games really was honestly the best book I've read in at least 2 years!!! It was gut-wrenching, heartbreaking, and beautifully written. (It seems like it was a work of love & passion for the author.)

I genuinely didn't want to put the book down, (or rather, turn it off!) and the only benefit in having finished the book is that I left it so long to get around to reading it, that I could jump straight into the second book in the trilogy, 'Catching Fire' (equally as excellent!)!!

'That moment' with Rue was one of the most emotional few minutes imaginable from a mere story.

In my opinion, it was all the more emotional because there is grounding in reality. Ok, so in many countries, we are very lucky with the lives we lead, in general. I live in the UK and count myself very lucky for it indeed! (Though even in our own country, there are people living in abject misery every day of their lives!) But there are many countries (and many past civilisations) who are not so lucky with their governments, their living conditions, their culture. People die all the time in horrifying circumstances - and do terrible things to one another as a matter of course.

Katniss in particular is a realistic, beautifully written character - I like her all the more for her flaws and imperfection. She's not, perhaps, a naturally kind, loving character (except to those she sees as family), but she is very much a product of her society. I see in her someone who has shut her inside self off from the horrors she sees around her, creating a hard shell around herself to protect her heart. Yet even so, she finds it in herself to put herself forward to save her sisters life ... and later others, too. I find that not only realistic, but admirable and loveable.

I feel really drained emotionally from reading this book, but I'd do it all over again in a heartbeat!!

View all my reviews

Reader Question : Have you read this book? If so, what were your thoughts about it? What feelings did it evoke in you?

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Book Review : The Hunger Games

Tweet

Cognitive Disconnect

I just had to post a link to Dominique's latest, rather genius post, 'A Play : Cognitive Disconnect'. It really shows what conversation is like for someone with ME ... very much what it's like for me almost every day right now!

I have the advantage that Anna is awesome at reading my mind / playing charades, and can usually guess what I'm trying to say almost straight away. I really feel for people who don't have someone to do that. It's especially helpful when she's trying to translate for someone else what I'm trying to say to them! I really needed this little bit of light relief today! Am so grateful I was able to read online for a few minutes this evening!

Of course it's a serious issue too, much as those of us who suffer from these kinds of cognitive issues make light of it. The ability to communicate is so vital for a human being - and when it's compromised, it makes life very difficult, very confusing, occasionally and potentially dangerous, and certainly very embarrassing at times!

A small snippet of Dominiques post follows ... you'll have to click through to her blog to read the rest! ;)

BOB:  “Are you ready?” ME:  “Yes” BOB:  “So where do you need to go?” ME:  “You know.  That place with all the stores in one place?” BOB:  “The Mall?” ME:  “Yeah!  That’s it! I need to go to, um that store across from that burger place we like … next to um Marshalls?  I think?” BOB:  “Are you talking about Ross’s? ME:  “Yup” (sigh) BOB:  “What do you need?” ME:  “Sunglasses.” BOB:  “Do you know what kind?” ME:  “Yeah.  Progressive. No profective. Dang. Um … the ones that don’t let the light go through the lenses.  The light bounces off the lenses.  I can’t remember what their called.” BOB:  “Uh, I have no clue what you’re talking about.”

Read more -------->>

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Cognitive Disconnect

Tweet

Adjusting The Sails

( Updated and Extended, on August 14th )

I'm lying here feeling .... welll, honestly, I don't even know what I'm feeling.

I'm fairly sure that this post is going to be somewhat of  a rant ... a gush of feelings that have been brewing inside me for so long, I feel like I'm going to go mad if I don't get them out. I just have to write!!!

Sometimes it's really difficult to figure out what it is that I'm feeling!!! Everything gets so overwhelming, and it makes it hard to process things, and to pick out & identify individual emotions.

 My whole body is pulsing with twitches, spasms, buzzing & a sort of pulsing - and I've spent most of the last few hours barely able to move. Barely able to even think, through the pulsing.

I feel that I'm a really gloomy person when I feel, and especially when I post, like this. I'm very aware that I need to find the peace and the joy that comes with finding something to hope on once again... but its alluding me right now. I'm not depressed I don't think - not any more than anyone dealing with my kind of life and situation wuld be. But I am really overwhelmed right now - there's just too much happening all at once. New scary symptoms, flare ups, stuff going wrong at home, the issues (ongoing) with my doctor, who still hasn't delivered on promises ... and now various appointments to sort out and to somehow find a way to get through without ending up in a full blown relapse. On top of that we found a lump on my beautiful dog Jessa, yesterday, so she has to go to the vets (without me!!) today. :( I can't even do that, and it makes me feel so useless!!! To be honest, (big tough me is about to admit that ...) I'm scared, and I feel small and once again,  on a running theme, invisible. Nothing seems to be going right, or easily. (Gosh I have so much to tell you guys and I don't even know where to start! I can't do it now anyway. I'm surprised i've been able to keep writing for this long!)

I'm feeling so frustrated with myself, too. So utterly useless. I can't manage to do any of the million and one things that need doing... and unless you've been there, no-one can know just how hard that actually is. Lying in bed all day is not all it's cracked up to be!! I really, really hate watching Anna (my carer) struggle to do things for me, and I can't even help. I feel like a waste of space too much of the time.

You know what I hate about M.E.?? I hate that you can never fully adjust to it.
You can never get used to it, because suddenly, bam!!!! something else, some new symptom, changed intensity, or new disability hits you full in the face, and you have to statrt adjusting and coping all over again. 

Blowing Away by Jon McGovern

On top of all that, yesterday I had a full on, in my face, flashback of my ex husband attacking me. (I'm a survivor of domestic abuse, for those of you new to this blog) Just what I needed to get through the day, huh? Honestly, I thought I'd pretty much got over what he'd done to me, and all the fallout from the years of abuse, and other people's reactions to it - but this flashback was pretty intense and afterwards I felt broken. Heartbroken. That was the man I had loved, but he used me and he hurt me. So on top of being overwhelmed, scared, and everything else - now added to the mix is a grief so massive that I feel like I'm breaking into tiny pieces and being flung to the wind. All over again!

Recently it seems like I keep putting my hope in things, trying to find someone or something that can help ... but my hope gets hit every time and then the only things to do are either give in to depression and panic, (which I'm simply not willing to do!) or find something new to hope into. But I know I'm strong enough to get through all this - and whatever else life throws at me. I have up until now! Afterall, I have Anna, my best friend in the whole world, fighting my corner and caring for me instead of going off to live her own dreams. I have some amazing online friends, who have got me through so much over the years! I have my dogs. And a family who loves me even though they don't really understand and can't really deal with it all. And I have the online ME community, which is also making such a difference in my life. Perhaps those things are the only hope I need right now, they're sure strong enough positive's .... afterall, there are so many people out there going through so much more than this. And well, because of the people 'around me', at least I'm now standing up (well, not literally, HA ... ooh, the irony of that statement!) and trying to get the help I so desperately need, and deserve!!!!!!


◦ - - ღ - - - Because I do deserve it. We all do!!!!! - - - ღ - - ◦

And on that note, albeit it something I know in my head but not yet my heart, I'll end this post!

Note : Sorry about all the mess of this post. I'll try to edit out all the typo's etc, tidy it up, maybe add pics, and tag it etc, tomorrow .... somehow i just needed to get this out... though i feel i've done a very poor and very short job of expressing myself.

I think I just needed to speak, to vent as many of the things that are
splintering me, crack by slow crack, as possible .....
for my feelings to not be so invisible as I myself have begun to feel!!

Update : 14th August

Thank God, Jessa is ok! The vet found quite a lot of lumps actually - but they are, as I was hoping, just fatty lumps, which she's had a couple of times before. He doesn't even want to bother removing them right now, and won't, unless they get bigger or start to bother her in some way. So that was a huge relief for us!! :) :) :)

We had my other dog, Kiya, checked out at the same time, and ironically, the story there was more worrying. A while ago, a different vet at the practice found a lump on her liver. Kiya's starting to get old now, and has a lot of really severe skin and immune problems, so we decided (on the info the vet gave us) not to bother doing anything to get it further checked out, because I wouldn't want to put her through any intense treatments as she is going through enough already. However, the vet we saw this week (One of the practice owners) checked the lump for us, and he thinks that it's on her spleen, not her liver. He can't be sure till we get a scan, which we're doing next week - but if it is on her spleen, it would be a fairly simple operation to remove her spleen. A completely different scenario to it being on her liver!!!!

Jessa, on a walk with me & Anna, on a rare holiday to Scotland in 2009

Kiya, curled up behind my knee - she loves to be close to us! In 2010

I'm pretty mad with the vet we saw initially, as this issue could have been sorted months ago ... but then at the same time, I'm so glad that he was probably wrong, because this means that Kiya's life will probably be much longer than I was thinking! Guess we'll have more information after she's had her scan next week. It means a general anaesthetic, (which is always very stressful and worrying for me, because of the risks) but hopefully it'll be worth it - and my dogs usually come out looking less harried than I do, rofl!


I've finally got to adding pictures to this post, and getting rid of all the typo's (sheesh there were a lot!!) - I had hoped to do it the day after I wrote this post, but I've been really struggling to get online, and my cognitive functions have been pretty poor, so that just wasn't gonna happen. Ah well, got there in the end!! :)

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Adjusting The Sails

Tweet