Fears and Potential

I'm a little freaked out by something that happened this week.

I've been needing to take naps during my usual waking hours (night-time) for the last few weeks, now. I'd almost go so far as to say that I feel like my balance is tipping back towards hypersomnia, after several years of generally more healthy sleeping patterns, with bouts of insomnia... Except that I've still had days recently when I've struggled with insomnia during the daytime, too.

Anyway, a couple of nights ago, I very suddenly really needed to go to sleep, and just couldn't keep my eyes open any more. (something which is not unusual right now) But as soon as I settled down, I began to have paralysis episodes, where I couldn't breathe or move for a little while, then would fall asleep, then jump wake again suddenly with the same issue. This happened several times in a cycle over about an hour, and i couldn't pull myself out of it... then just as suddenly, I was able to wake up properly again.

What is worrying me is not so much the episode itself, (though I can't deny it was frightening!) but the fact that I've experienced it before, just not for several years, since the worst period so far in my illness. (In fact I have quite a few symptoms cropping up which I haven't had since that time and I'm really concerned at what that might mean.) The period in question was when I was having both these 'sleep paralysis' episodes on a frequent basis, and also full or partial body paralysis sometimes lasting hours, often for days or more. At that time I required near to total care from my carer the majority of the time. I never want to go back to that level of severity and honestly, it's kind of frightening that I am beginning to re-experience some of those symptoms which I've been free from in over 4 years now!

photo by Meredith_Farmer	via PhotoRee

It's particularly horrible given my current lack of medical support... although I guess the truth is that I didn't have much support the first time around either, plus, much less knowledge personally about my illness! I was at the time seeing an ME specialist who (although working in a clinic where the treatment options were only graded exercise and cognitive behavioural therapy) had enough knowledge of and belief in the physical symptoms of M.E. that he was able to to tell me that yes, these symptoms were found within the realms of severe ME. However no tests or assessments were arranged and I didn't have the self-confidence, knowledge, or energy to push for more. I was just grateful not to be told I was crazy - and at least I had someone who KNEW, you know???

I know that the only thing I can really do right now to try and stop things getting any worse, is to listen to my body's limits as much as possible, and rest when it tells me to - but that's just so incredibly frustrating!! I can't go back to where I was - I'm struggling to cope both physically and emotionally as it is, as is my carer. I just don't think I ... we, can go through that again. - especially now that I'm not living in my own home with just me and Anna anymore. I honestly can't imagine dealing with all that in a more public setting, even though it is family members.

I know I need to be as positive as possible, and hope for the best, but I also feel it would be foolish not to see the reality of my situation at the same time, to do what little I can both to prepare for it, AND to avoid it! Myalgic Encephalomyelitis is, after all, a waxing and waning illness. I haven't ever had a complete remission in the last 16 years, and I've been severe for 8 years, which statistically gives me a smaller chance of getting better and a greater chance of getting worse. Having no real medical care also goes against me as so many of my associated symptoms and illnesses are getting worse when it doesn't necessarily need to be the case.

So... The plan..?

Try not to let myself get too scared.
Don't bottle up my feelings because that only makes it harder not to be scared!
Rest, rest, rest!!
Try to resolve this GP situation and get myself some domicilliary care as soon as possible - if possible!
Rest, rest, rest!!!!!

If anyone has any better ideas, useful advice or info, or any thoughts in general, please let me know! :)

On the plus side, apparently my liaison at our GP surgery has been working on sorting out my situation there. She's meeting with the practice manager this week, then my carer is seeing my new dr on my behalf and then apparently I will be discussed in the next practice meeting. (kind of scary all this going on without any direct input from me, but it's got the potential to be the most positive thing that's happened in years in terms of my medical care, so I just have to let it roll and see how things pan out!

I wouldn't often ask this, but if you pray, please could you send some up for me? Not only for this situation to work out as well as it possibly can, and that I start getting some real and available medical care ... but for me, to not give up on hope and to have the strength to keep fighting this minute by minute fight. I really need this to work out because otherwise I really will be left with no medical care whatsoever, sigh! Thanks guys - you really are the best!!!!

This beautiful image, 'Birds of Hope' is by Cornelia Kopp	via PhotoRee

"Sometimes in the darkness, while wolves howl and we feel the cold touch of fear against our spine, a faraway light glimmers Sometimes in the press and the chaos of the crowd, in the noise and the hurry, a soft voice whispers. That light, that voice, is Hope. Sometimes we feel as though trying to catch hold of it is like trying to dance with clouds or turn lead to gold, but its always there waiting to suddenly appear right in front of us. within our reach." Poem by Sarah-Louise Jordan, used with permission and much thanks! Sarah has two blogs which I highly recommend you visit. The first, 'On a Long Road, Take Small Steps' is about her long journey with Severe Myalgic Encephalomyelitis. The Second, 'Life is Uncertain, Eat Dessert First' is her poetry blog - and I have to say, she is genuinely a talented poet & writer!!

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! :)

Fears and Potential

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The Universe Just Keeps on Giving! :P

Unfortunately, those gifts just aren't always good!!! Sigh.

We just found out today that my GP has suddenly up and left the surgery, with no warning whatsoever to patients (and according to my liaison at the surgery, it was a complete shock to the staff there, too!) and no obvious dr to switch to within the practice, for those patients who only ever saw the Dr who has left, because she was easily the best Dr in the practice and one of the better Dr's in the area.

I have had my problems with this Dr, but most of them were as a result of the area we live in and the restraints of the practice she worked for, rather than her being a really bad doctor ... But despite all that, I'm feeling a bit panicked about this situation!! She was the only Dr there who knows anything really about my condition, and about our situation here at home. (and how would a new GP get to know me when they refuse to do home visits 99% of the time, and I cannot get to the surgery???) She was also treating Anna who has been very ill for a couple of years, again with quite a complex condition. (Anna has Post Traumatic Stress Disorder, too, and really relied on our doctor to be sensitive to that. She's been crying on and off all day, she's so upset about this - which makes me so mad, I can't even tell you!!!) I know, too, that the Dr treated quite a few other very vulnerable patients, so she has left us all very much in the lurch. I feel really quite angry that she gave us no warning at all, and that she apparently hasn't formally handed us over to any other doctor. To me, that is really, really unprofessional!! She was the only Dr I had even a small amount of trust in at the surgery ... And I honestly have no idea what Anna and I are going to do now!! I was invisible enough already at my practice and now, presumably, there will be no-one looking out for me at all! I've rarely even met any of the other doctors!! I just feel so numb about it all. Neither I nor Anna have the emotional or physical energy to deal with this - there's enough to cope with already!

There isn't really any good surgeries in this run down inner city area, so it's not even like things would necessarily get any better if we picked up and moved to one of the other practices - and it's kind of like playing Russian Roulette because you really have no idea what the doctors are actually like until you switch to their practice. (It's not like in America where you can really pick and choose your doctors, and go to meet them before you transfer to their surgery, etc.) It's not such a problem in the wealthier areas of the country, but it can be a serious issue in the poorer areas because the NHS doesn't dole out the money fairly across the country, and because many of the good GP's refuse to work in the run down areas of the country.

I really feel like I just faded a little bit more ... like I was hidden in deeper shadow from the outside world, and I have no idea how to become visible again. :(

'A Fading Girl' by Sarah Allegra, Used With Permission.

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! :)

The Universe Just Keeps on Giving! :P

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Scared of the Stigma of Being Mentally Ill...??

I'm sitting here thinking about Simon Wessely's much broadcast view that people with ME are simply scared of the stigma of being labelled as mentally ill. That, that is why we won't accept that our illness isn't psychological. I'm considering the oaths that doctors take at the beginnings of their career - and seeing clearly that the psychiatrists who have so terribly treated people with ME have broken almost every one of them in one shape or another. And I'm wondering how much it was those broken oaths that got us to the position where an ME patients' doctor can think that it's ok to neglect to reply to communications for weeks, even months at a time. Where the patients are responsible for their own biological research funded if they ever want to know what's really happening to their bodies, never mind get treatment for it. Where patients and their carer's constantly have to fight to get basic care needs met. Where promises are consistently broken by our medical teams. Worse, where the opinions of the few have become the feelings of the many, via the very clever media manipulations on the subject of M.E., that have been a constant in the UK for decades now, thus negatively affecting our treatment by insurance companies, welfare state, families and the wider society!

Dr's take an oath to do no harm - in fact, to do good; to protect the health of their patients; (interestingly, and perhaps key for us as ME patients, they are expected to make the care of their patients come first, above and beyond the needs of the Trust, NHS, or society!!); to keep their own professional knowledge up to date; to respect the dignity of patients, politely & considerately. To be open, honest, and to act with integrity; to never discriminate, and so much more. I just have to wonder why, how they would then think it ok to treat us the way they do, just because of their personal feelings, or because of what the NHS's stance is on that patient's specific diagnosis? How, in the case of my own doctor at least, can she genuinely not see that she is in fact being neglectful?? Because despite the fact that she has been making some efforts to improve things, the care I'm given still doesn't even barely reach that which a person this ill with most other diseases would receive.

How is it, in fact, that in our society, different diseases are somehow given different status. 'The Big C' of course is given the most respect, patients awarded as much care as humanly possible (in the majority of cases, at least - there are always sad exceptions) - M.E. is awarded the very special status of having the least respect, to my knowledge. It's victims are actually made the laughing stock of the medical community and the media. Illness just isn't simply illness anymore!


Professor Wessely has many times now made the case in the media that ME patients refuse to accept the psychiatric model of ME because we're scared of the stigma of mental illness. What a joke! I face stigma every day worse than that of someone with a mental illness, because as well as being viewed as just a label, treated with disrespect & ignorance, I am also treated as though my illness in fact doesn't even exist. (Which would not be true even if ME was a psychiatric disorder, since that by definition IS real!) My physical symptoms and disability are downplayed, ignored or disregarded, often completely disbelieved. Everything I say, do, believe, and am, is up for grabs for doctors to pounce upon as a reason why I am not as important as a patient with a real illness and why what I say about my illness, body & life can't be true. I've spent the last 15 years being neglected in a very real way, given little or no treatment, even where tests have proven some physical problem. I am not even given the majority of the tests and treatments recommended by international specialists for my very real illness. In essence I am just left to rot, along with everyone else with this diagnosis. And this isn't just my experience! Hundreds of thousands of ME patients in the UK have had this kind of experience, or much, much worse. Millions worldwide are little better off.

I truely believe that I would have a much, much easier time accepting a diagnosis of depression, borderline personality disorder, obsessive compulsive disorder, etc than I do dealing with what ME has done to me, to my life, and to the lives of my loved ones. I know many people still hold a stigma against things and people they don't understand and this makes life often really, really difficult for people with psychiatric disorders, and I don't want for a minute to downplay the agony many of those people face! - But I'm a nurse and I personally have no issue with people who are mentally ill - I find them in main very brave survivors! I refuse to stigmatise them for what is real illness. They're all human beings just like me and you - none of us perfect in any sense of the word. So the question remains: why should I be afraid to be part of that group? The truth is, I'm genuinely not any more scared of that than I would be of developing any other illness I might experience in my life! That's not to say that it wouldn't be scary and very hard indeed at times or that I wouldn't have to face stigma if I was in that position - of course it would be, and I would - but it's my opinion that it's harder in this current society to have a diagnosis of M.E. than it would be to have been diagnosed with the majority of mental illnesses, both because of the stigma, and because of the illness itself and the destruction it's wrought on my life.


What I do take issue with, what I am afraid of, is my reality of having a real, proveable, disabling physical illness (which cannot even begin to be explained by Wessely's definition of ME as an 'illness belief') be ignored and left untreated. Illness beliefs do not cause tachycardia's, palpitations, blood pressure imbalances, fainting, weird and wonderful blood test results, limbs that go literally blue when you are merely sitting, paralysis, temperature & sleep disorders, sensory overload, severe chronic pain, body clock reversal, and all the other things I, and many other severe ME patients have going on. (I personally have a scary list of symptoms several pages long, which probably makes me look like I'm completely mad when I hand it to a doctor, lol!)

photo by ValetheKid	via PhotoRee

Illness beliefs don't cause people to become literally bedbound, struggling even to go to the bathroom a couple of times a day - never mind to only be physically able to have a shower once a week!!! (If you've never tried it, don't bother - it sucks as much as you might think it would, and worse!!) They wouldn't cause tens of thousands of people, in this country alone, to lose their careers, social lives, personal hygiene, healthy bank balances, their homes, friends, and sometimes even their families. They sure don't make you choose to endure the degradation & humiliation that comes with needing personal care such as help having a bath, or someone having to cut your food up before meals, or even to have their carer's need to feed it to them like a young child!! In addition, I take issue with the fact that these doctors, treating us so neglectfully, or downright mistreating us, all swore an oath to do no harm!!! That is the most important vow a doctor takes, yet the one most ignored when treating patients with Myalgic Encephalomyelitis!!

It's a very, very rare psychiatric illness that could cause such enforced human misery in a person and such a terrible quality of life for it's sufferers - and moreso, I simply don't believe that an ilness belief could cause that suffering on the scale of what we are seeing with cases of Severe ME, where 25% of people with this diagnosis are housebound or bedbound, often for years or decades at a time!! What's more, it makes no sense that those people all would be struck down by an illness which follows such an extremely similar pattern (usually despite a previous lack of knowledge about ME on the part of the patient), and in fact has often occured in clusters! To my mind, there are so many obvious points that make it absolutely inconcievable that this illness could be concocted in our minds somehow. This many people (hundred's of thousands in the UK alone, of all ages!!) would not choose to live in such conditions, if they had any choice in the matter - especially people who in previous lives pushed themselves regularly to their limits, fully enjoying their life, freedom, & health.


So no, Professor Wessely, I am not afraid to accept the stigma of having a mental illness. I'm simply afraid (not to mention disgusted) that the environment you helped to create in this country (and beyond!) is neglecting & mistreating people on such a massive scale. I'm angry that one group of doctors, headed by one man has changed public perception to see only their personal opinions, despite the fact that they are not backed up by international science/research. I'm angry that the majority of journalists reporting on M.E. seem only interested in catchy headlines, not truth. And I'm angry that I am one of those forgotten, abandoned, invisible people & that I cannot even enjoy the most basic of beauties, such as the sun, trapped in these four walls with dimmed light, as I am. I'm frustrated that for 15 years, I've had so little real medical support that I now have to do all the research into my condition myself, despite the consequences for my health, because there is no doctor specialised enough, or willing enough, in my area to do it for me - few, in fact, in the whole of the UK. And quite honestly, I'm terribly afraid that these situations & prejudices will not soon change for us, no matter how hard we fight them, as they are deeply ingrained in the public mind, thanks to your media tinkerings! I just wish you and those who agree with you would try to understand that unless you have walked a mile in our shoes, (or in my case, simply stand up, still, for a few minutes - that'd be plenty to show you how bad it gets!!) then you can't possibly understand just how real and destructive this disease really is - though truthfully, I wouldn't wish even those few minutes of this disease on even you, Professor Wessely - No-one deserves this!!!!

If you're reading this and all you know about Myalgic Encephalomyelitis is what you've read in the media, please find out more from reliable sources! Until you've really educated yourself, you can't take the word of a journalist or even a doctor as truth! So don't judge us based on what you read in the papers - after all, you never know when you might find yourself walking in our shoes too, and I'm certain that if you did contract M.E., you wouldn't want to be judged like that either!!

There are many links in my sidebar to great sites & books about M.E. that will help you to understand what it really is, and how it affects the people living with it. I particularly recommend the book Lost Voices which tells the story of many ME sufferers and their families in a really easy to read format. There are also many wonderful people in the ME community who would be willing to talk with you. I know I would love to help you really understand! Once you've read up, then speak out for us too. Educate your friends and family! It's only by us all working together, sick & well alike, to end this stigma and medical ignorance, that things can ever change! Thank you so much!! :)

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! :)

Scared of the Stigma of Being Mentally Ill...??

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Letter to my GP

Following the last 7 weeks of inaction from my GP (Read my post 'Am I Invisible???' to hear the story so far) I've emailed the below letter to her today, in a final attempt to get a response before I resort to contacting PALS, the Patient Advice & Liaison Service. I'm really hoping that my GP will realise just how long it's been since we last spoke, and will contact me. If she doesn't, I simply don't have the spare energy to keep pushing at her to do so ... and as I don't want to actually put a complaint in, (I'm concerned that that would only make the situation worse, plus she's a nice woman and I don't want to make her life any harder than it likely already is, working in a surgery with such low resources!), contacting the Advice & Liaison service seems like the logical next step.

I've never before, in 15 years of ME, gone this far in trying to get my doctor to help me. It feels very unnatural for me (my default setting is just to back off and not bother even asking for help, trying to manage it all alone) and I feel like I'm just a nagging child demanding attention. But I know in my mind at least that these are issues that I can't just ignore, this time - so I'm putting myself out there and hoping with everything in me that this situation finds some resolution, and that she will understand where I'm coming from and not just find me irritating.

I just wish I didn't have to push so hard to get basic needs met! It feels like a very vulnerable place to be, to be honest - like I'm putting myself into the bad guy position. It's certainly stress I can do without.

I'm crossing all my fingers and all my toes, hoping that this works!!!

Dear Dr X

I need to ask you, seriously, whether there is some reason that you haven't contacted me since our last phone call? It is now 7 weeks since you told me on the phone that you would calculate the amount of vitamin d I need to be on, and then contact me the following day ... only you never did. My phonecalls to the surgery and now emails (which took me a lot of energy to write) have gone unanswered and I'm at a complete loss as to what to do. 

I still can't get my appointment to see the gynaecologist, as I don't have the referrals paperwork from you (I need the reference number and a password, I believe, which could just be emailed if that's easier than posting the forms out!) and there are other outstanding issues that I need to discuss with you - all detailed in my first email, which I sent over 3 weeks ago now.

You told me that these things going on right now (cardiac, gynae, & vitamin d deficiency) were all urgent issues which needed to be dealt with straight away, yet they've all been put on hold for 7 weeks. I know from working in the NHS myself that this would never happen with a cancer patient (for example). It's not right that anyone, no matter what their condition, should be in  this situation where they cannot get help for serious issues. 

Please would you email me as soon as possible? I need to know where I stand, and more importantly, I need the vitamin d (and any other supplements I need additionally such as magnesium (to make the vit d absorb better) or calcium) to be prescribed so that I can begin to repair the damage that 8 years of being housebound has done to my body. 

I cannot send someone to the surgery to get my gynae paperwork or to discuss these problems with getting responses from you. Anna isn't able to get out and about very much and my mum's myeloma has just relapsed so her and my dad have enough to worry about without me asking them to call in at the surgery. 

We all found it rather ironic a few weeks ago when my mum had no problems getting a home visit by her GP (we live in the same house, but go to a different surgery) because she was in a lot of pain ... but she is nowhere near as disabled as I am. I'm willing to understand how busy you are and I know this isn't a simple situation because you are very overworked with few resources. But I'm not able to wait any longer, or to continue spending my energy on a fruitless search for help. I need a doctor who will listen, as you have ... but also one who will follow through on their promises and whose word I can trust. 

Kind Regards,

Susannah

Reader Question Over the last few weeks I've heard from so many  of you who have been going through very similar  things with your own doctors. I'd love to hear from  you if you've found any solutions to these problems   and what those solutions were!!   ㋡

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! :)

Letter to my GP

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Am I Invisible???

What are you meant to do when you're bedbound and your doctor is ignoring your attempts to contact her?

6 weeks ago, my doctor called me with the results of some blood tests, and about some serious cardiac & gynaecology symptoms I've been having. It had been pretty hard to get in touch with her at the time. My surgery refuses to do home visits for anyone unless they're cancer patients, because they don't have the resources. It's a common phenomenon in some poor inner city areas in the UK especially for people with illnesses like myalgic encephalomyelitis ... but it makes life pretty difficult when you can't leave your house to go to the surgery, and even phonecalls with the doctor are difficult to get about M.E. related issues. Eventually I managed to get a phone consultation with her about a minor infection, (how ironic is that when I have so many more serious things happening??!!??) and I took the opportunity to bring her up to date with more of what was happening with my health, which had led to the blood tests, and her phonecall with the results.

She was apparently very concerned at my vitamin d levels. I'm severely deficient (< 5!) - which is bad as it's probably been going on for years (I've been housebound for 8 years now) and my bones are likely in a serious mess as long term vitamin d deficiency causes Osteomalacia, which is essentially adult rickets. It's also likely that the deficiency is adding to my levels of illness in other ways, such as increased fatigue, pain, and muscle weakness.

We also talked over some serious cardiac & gynae symptoms (See my last post about these issues for more details) I've been having for some time now. She said she was referring me to see the cardiologist & gynaecologist specialists. She said that she would get the paperwork out to me, which I need in order to actually book the appointments - you don't even go on the waiting list until you phone the appointments office with the referral details. She said she was also going to try to get me booked in for 24hour cardiac monitoring before my cardiology appointment so that I'd have that information to take with me.

Additionally, she said she wants to refer me to specialists for bone scans etc because of the vitamin d issue, but would wait on it till I've seen the cardiologist & gynaecologist, because they are 'urgent' referrals (her words!) and I will only be able to cope with so much at once, physically speaking - any appointments outside the house are really major for me. She said that she was going to work out the dosage of vit d i would need (Possibly will need injections) and would call me the next day.

Now, here's the rub. That was 6 weeks ago, as I said, and I've heard nothing from her since, (despite phonecalls from me and my carer to the surgery, and an email from me to her work email address) apart from an acknowledgement that she had received the email, and a promise to reply within 2 days. That was a week and a half ago now!!!

She didn't even send me out the paperwork for the referrals, (though she did put the referrals through) despite phonecalls asking the receptionists to look into it for me, meaning that that's 6 weeks these so called urgent referrals have been put off. I finally received the cardiac appointments paperwork this week - we think the practice nurse may have posted them out - so have been able to go onto waiting list for that apppintment. However, there's still no sign of the gynae paperwork so I can't even get onto the waiting list. As for vitamin d, absolutely nothing is happening, which, considering how freaking worried she was, seems pretty outrageous to me!!!


I really, really don't know what to do now! I feel like I should be very angry ... and I think I am, in some part of my mind ... but mostly I feel really really upset and am losing hope that anything can ever get better with this kind of situation. Hope that I had only just begun to gain back after so many years of being chucked around by the NHS, and losing trust in them to the point that I have rarely seen a doctor over the years I've been severely ill. I really thought that perhaps this doctor would be the one to care enough to give me the treatment any other person with any other illness would automatically get. I guess I was wrong.

Every time I think about all this, I'm tearing up (unusual for me!) and honestly, feeling quite scared to be so alone with such scary symptoms. The cardiac problem especially seems to be getting steadily worse. When I'm upright for a while, like when I have a shower (sitting in my shower chair) my feet are now going so grey/mottled/blue that it's kind of freaking me out - watching that getting worse week by week is the kind of visual aid I can really do without!!! It feels sort of claustrophobic - like I'm trapped in this crappy situation, because there's nothing I can do to make her do the things she promised to do. Nothing I can do to improve this situation. I don't have the energy to fight any harder. :(

I honestly feel that there is no way that this doctor (who's very nice, by the way) would ever treat someone with a different, more accepted illness this way, and it feels so completely unjust and unfair. But there are few options for someone like me in the area I live. It's really hard work to stop myself from falling into hopelessness! I want to be happy and I work to be happy - but this issue makes that fight much, much harder! I feel utterly invisible ... and I'm just so, so tired of having to fight for the simple right to be treated like everyone else.

photo by slurpiesandstraws ☮	via PhotoRee

..... Read the continuing story in this related post : Letter to my GP | The Thing With Feathers

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! :)

Am I Invisible???

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Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome

This talk on the Chronic Fatigue Syndrome Team at Stanfords research, findings, & position on CFS was given a while ago now, back in March, but I've personally only just seen it, and am guessing there are others too who managed to miss it at the time it was first circulated on Youtube, so I wanted to share it here today.

It's so encouraging to see some real, positive research happening into CFS which doesn't begin with the premise that it is caused by psychological factors, and I found this fascinating viewing. Dr Montoya is very genuine and appears to sympathise very much with his patients, both for the physical hardships they are suffering, and also for the psychological harm they are undergoing because the majority of doctors (and the general public) dismiss our illness as 'not real', and the patients as 'malingerers' etc.

I particularly liked that he addressed the PACE trial so honestly, stating that it absolutely did not prove that CFS is psychological, or that psychological treatments can cure it.

Stanford have now set up a website where they will be posting relevant information on CFS as they progress in their research. You can view this site at http://chronicfatigue.stanford.edu/

This presentation is an hour and 15 mins long, but I highly recommend that you watch it if you're a CFS or ME patient or are simply interested in this area of research - it's worth the time!

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! :)

Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome

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May 12th: ME/CFS Awareness Day

Post written by Laurel, & re-posted with permission!

May 12th is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.

So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:



1. Chronic Fatigue Syndrome (CFS) is a serious disease with a ridiculous name. CFS is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E). It is often abbreviated ME/CFS.


2. ME/CFS is a complex, multi-systemic illness, affecting the immune, endocrine, cardiovascular, autonomic, and central nervous systems. It is classified by the World Health Organization (WHO) as a neurological disease.


3. In order to be diagnosed with ME/CFS, you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50%, as well as at least four of the following symptoms: post exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory loss or difficulty concentrating. These symptoms must be present for at least 6 months or longer. ME/CFS patients often also suffer from neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, flu-like symptoms, shortness of breath, chest pain, and other symptoms.


4. According to the CDC, ME/CFS can be as or more debilitating than multiple sclerosis, lupus, COPD, heart failure, late stage AIDS, and end stage renal failure.

Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted in The New York Times as saying:

"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

5. ME/CFS afflicts both genders of all classes and all ages, including young children. Approximately 1 to 4 million Americans have ME/CFS. That's more than breast cancer, AIDS, or lung cancer combined.

Additionally, at least 17 million people suffer from ME/CFS world-wide.


6. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are homebound or completely bedridden.


7. ME/CFS often has a viral and sudden onset. Many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with ME/CFS, including mycoplasma and Lyme Disease.


8. In October of 2009, Science Magazine published a study showing a link between a newly discovered human retrovirus (XMRV) and ME/CFS. This study was conducted by the Whittemore Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic.


9. There are over 5,000 published studies showing a clear, biophysical pathogenesis in ME/CFS. Some abnormalities found in ME/CFS include: low natural killer cell count and activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, left ventricular dysfunction in the heart, and delayed VO2 max (maximal oxygen utilization) following exercise or exertion.


10. ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment).


11. Despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.


12. Currently, there are no FDA approved treatments for ME/CFS, and there is no known cure.



Sources:

Phoenix Rising: About ME/CFS

Whittemore Peterson Institute

The CFIDS Association of America




Some things you can do to help:



1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.


2. Don't call CFS "chronic fatigue." CFS is a complex illness affecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.


3. If you know someone with CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say and ask if there's anything you can do to help.


4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.


5. Take a moment to ask the Secretary of Health to implement the recommendations of the CFS Advisory Committee. The CFIDS Association makes this easy for you. The letter is already written, so that all you have to do is add your name and address. There is room for further comment should you choose to add any additional thoughts.


6. Wear a blue ribbon to show your support. If you are on Facebook or Twitter, consider putting one of these Twibbons on your profile picture to raise awareness.

ME/CFS 12th May Awareness Twibbon
Pandora Neuro-endocrine-immune centre Twibbon
XMRV & ME/CFS Twibbon


7. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities, such as the

Whittemore Peterson Institute,
The CFIDS Association of America, or
PANDORA.

If you are unable to donate, you can instead write to your local senators or government representatives and ask that they allocate more funds toward ME/CFS research.


8. Below are a few informational videos about ME/CFS as well as XMRV. Take a look, listen and pass them on.



SolveCFS Video





XMRV Discovery





Sleepydust Video





For more information on ME/CFS please visit any of the organizations linked on this post, or in the 'Useful Links for ME Support & Info' section on the sidebar.

This post was written by Laurel on her blog Dreams at Stake, & was re-posted with permission, with many thanks to her!

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! :)

May 12th: ME/CFS Awareness Day

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