Lymphoma drug Rituximab for MEcfs

Dr. Øystein Fluge is Chief Physician in the Department of Oncology at Haukeland University Hospital, University of Bergen, Norway.  He received his medical degree in 1988 from the University of Bergen and has specialized in oncology since 2004.  He has conducted research at the Surgical Institute and Department of Molecular Biology, University of Bergen and has been funded as a Research Fellow by the Norwegian Cancer Society.

In 2004, Dr. Fluge and his colleague, Dr. Olav Mella, a neurologist at the same institution, noticed that a patient’s ME/CFS symptoms improved substantially while undergoing chemotherapy treatment for a concurrent diagnosis of lymphoma.  This was followed by a pilot study in 2009 with positive results. In 2011, Dr. Fluge, Dr. Mella, and their colleagues published a randomized double-blind placebo-controlled trial of rituximab in 30 ME/CFS patients demonstrating that  two-thirds of the intervention group experienced moderate to major improvements in their ME/CFS symptoms. For a medical condition with no disease-modifying treatments, this was a ground-breaking study. Currently, they are in the midst of attempting to replicate their results in a larger Phase III multi-center study in Norway.

The above was Dr Fluge's bio from the recent IACFS/ME Conference outline.

I was just wondering if you've got any of Dad's cancer/immune suppression/B cell depletion drugs still lying around?  I guess you think I'm joking.  Which drug ending in mab did he use?  It's just that by the time they figure out how to cure this thing and release the drug to the impoverished masses via Medicare, I could be dead.

Went to Coles for the first time in ages today.  I've been ordering groceries online since I couldn't walk straight, was dizzy and my heart was pounding after moving my body, even lifting an arm.  I did use the new wheelie walker at home but at the Golden Beach shops/doctors I only used a walking stick or just went ultra slow.  I only went out when I had no choice. I've had problems with breathing too as you know.  The first three things have just vanished more or less overnight when I started taking Jarrow Formula's sublingual Methyl B-12 which is not the same thing as what you can buy at the chemist because of the type of B12.  I have been taking it for 2 weeks I suppose and I am sure my brain is working a bit better too and I'm not falling asleep all the time. I do not know how much that 2 weeks has altered my serum B12.  I guess it may not show up as "Low" on the blood test I requested on Thursday but I am heading to another new doctor next week to find out.

I have read that people are getting neurological (including dementia) symptoms from low B12 even before it reaches the cut-off point for too low that the pathology labs set as standard.  I wish they would do something about that because the doctors set their standard by the pathology labs.  My doctor recently ran some blood tests but they were the same old ones and even if anything was slightly raised I would not be told.  I just got the standard reply "no action necessary".  It was hard enough to get an actual figure for my blood glucose 3 month average which was a well-controlled 6.2, one point up from last time.  What I mean to say is that if low B12 is going to be the explanation for my decline this year, then it will not be forthcoming from my regular doctor.  I'm doing this myself.  It also ties in with my MTHFR gene mutations.

My legs wouldn't work properly

My legs stopped working properly this week but I could not figure out what the major contributing factor was.  One day of it was scary enough but my tried and true treatment (don't use any part of your body that is complaining unless you have to and go to bed early) had me convinced that it was only temporary within 2 days.

Despite sitting mostly, the rebound suffering after Connor and Co's visit proved too much for the anti-inflammatory effects of the Prednisolone at that little dose anyway.  It has been really bad since then so I could not get to the Lung scan even after resheduling during the week.  I made it to the pain specialist with the help from a friend who drove me.  On 10mg bid now - added 5mg to night dose of main ingredient in Targin.  It does not cover my pain but I did not seem to be able to get that across to him.  He had me out the door in 10 minutes.  He was not interested in discussing the neurosurgeon report either.

 Remind me to phone housing next week.  The kitchen vinyl was not included in the contractor's instruction.  It will mean a hotchpotch of colour/joins if that is not included.

Autumn health rave and Birthdays

I did something I've been putting off. I've really gone downhill in the last 12 months. I knew I was pushing it going out for my birthday when I used up my energy just hurriedly walking to my ride out the front. Due to brain fog I had to come back to the house to get something and then back to the car again and by this time I was walking as slow as.....someone with congestive heart failure....was going to say an 80 year old but that is totally wrong....my mother is 87 in a couple of weeks and she would not have any idea what walking with heavy legs, heart palpitating, and breathless at such a slow pace that you are embarrassingly obvious is even like.  Anyway I phoned Centacare for domestic help.

I'm already with Centacare for lawn mowing but I filled in all the paper work today for this stuff. I'm pleased to find out that they do one hour blocks instead of a 2 hour minimum. That's easier (and cheaper) for me to tolerate. Just the floors is fine for starters. I can still tolerate being upright so I am not bed bound and I can walk slowly but not for long before I know I am doing damage.  I need the Deralin again.  Toilet and back is about it but I am used to doing everything tiny bits at a time anyway.

Also am now trying to decide about the mobility scooter. Would you believe that it has been on consignment in a shop for 2 years and it still has not sold so I guess I can just bring it back home for a delivery cost (which is nothing to sneeze at) but I remember not using it much you know. When you really need it just to get out of the house, you have to have enough brain power to operate it and be able to weather the elements and have enough energy just to get ready to go out on it and that makes it harder to use than a car. I can still drive so I am seriously considering taking it to park at a nice view on such a nice day but at the same time I know I would be better off just going back to bed or playing my game.   All the storage problems I had with that scooter, do I want that again? Even the hassle of charging it up all the time? I can't fit it in my car so it is no good for going shopping and using it to go shopping might be an outing up to Pelican Waters but do I really need to add all that extra time to something that can take less than half an hour if I had the energy.  Saving energy is the name of this game.  Going into deficit like I did on my birthday is asking for relapse which could become permanently established as the "new normal"   We had April showers a lot and again.  It is either too hot out there or raining. The scooter decision, it can wait.

My brain is still good enough to entertain me; thanks my lucky stars. Take away my brain and I might start getting depressed again. I can live with the forgetfulness but not the inability to engage in conversation or pursue some online reading/research. If I get back there, please someone come and drag me back to Dr Andrew because I don't know where else to go. But first I will have to cash in some Super (again). Better do it now because if I get any further into bed bound knowing me I will just lie there day in and day out because the thought of pushing myself to even get to a doctor is all too much.

I should see if he will treat this chest thing that is NOT mycoplasma pneumoniae according to the traditional tests. I should, I should. I should...but how? And I reckon I must be nearly due for another hi-res CT scan to check on that lung nodule yet no-one has made any attempt to kill off what I reckon is a stealth infection apart from that one short course of antibiotics that gave me profuse watery diarrhoea.  If I was a doctor, I would have given myself more of a chance of seeing at least a reduction in that lung nodule size through the use of steroids if not more antibiotics but if it is still there I will be going to see Andrew even if it kills me just so I can prove it is not a tumour before they start doing biopsies and shit.

I guess what this post is about is acceptance that I need help.  I still don't want it and I really don't want people coming in here and "assessing the situation" and making notes about.....me.  I did not like it last time.  They watched me disintegrate psychiatrically when the antibiotics crossed the blood-brain barrier last time.  At least I am more aware of what could go wrong now and my treatment will have to be slowed way down at the first sign of anxiety.  But right now, I'm as placid as they come.  I certainly don't sit here worrying about my future but I still have to consider it from time to time which means climbing out of the one-day-at-a-time approach which is relatively comfortable now that I look after myself.  I'm really glad I persevered with obtaining pain meds officially.  I have some measure of comfort for several hours every day but that damn Targin does not last 12 hours like it is supposed to.  Seven maybe?

Something good healthwise happened in April, the migraine things I associate with my back being "out" (which it probably isn't since nothing I can do posture-wise including some convoluted positions, does not seem to help get rid of it even if it shifts the pain/pressure) disappeared all by itself.  The physio appointment made it worse.  So I guess that headache broke the record since it went from before Christmas to early April.  It's not really gone but it is not being provoked simply by moving my arms within my "safe" range of movement.  I am not ready to walk around with my arms above my head though.

All sorts of things happened healthwise in April.  Actually, they haven't stopped happening since April 2015 when I had high blood pressure, hives and high blood sugar.  Quitting egg white, sugar and taking Deralin/Inderal solved those problems but then I had major problems with gastroparesis which I came to recognise required a change of diet which unfortunately does not bode too well for the diabetes so it has been a constant juggling act ever since.  That is pretty typical of my life now.  Juggling the effects of medications and their withdrawals with the state of my gut and head.  Serotonin sensitivity made itself even more obvious the more I took pain killers particularly Tramadol but I was glad to have the Tramadol to act as a quick and dirty relief for the Serotonin withdrawal head zaps on movement so it was a life saver if I forgot to take my anti-depressant and went into withdrawal (within hours).  When I went on the stronger pills I thought it would be a good idea to cut down on the anti-depressant again but they don't make half-strength capsules only a liquid suspension which is fairly unkind to my reflux.  The year had already seen me cut down and make the switch from Effexor to Lovan in an effort to shed some of this weight but it only worked so much in that regard and my pain levels have been much higher on Lovan compared to when I was on Effexor, and the forgetting to take my tablet withdrawals were even worse on Effexor.  Maybe there is an anti-depressant that is somewhere between the two that would suit me better but trial and error is not a fun way to find out.

I've slept a lot of May away so far.  Been in recovery mode which means not doing much more than playing Wartune and attending to the doggie.  And when you are forced to bed, it is nice to have my toes licked by Milo.  I still get the giggles

My 61st birthday was the start of yet another relapse but at least I got out to the RSL for lunch and I met a couple of new people.  Lymies.  I was not feeling very well this time last year in Hervey Bay either but I had several days of holiday before it to wear me out.  This year I have been able to get out way less without suffering a relapse.

For some reason, this year I wanted to be with people but so many did not turn up.  Brenda and Sharon had other things on.  Ange got side-tracked and forgot at the last minute.  Rob piked because of the rain? Shazz did not show.  Karen turned up late and Kerryn from Beerwah just popped in with her hubby to meet me.  She cannot sit so that is why she did not come for the actual lunch.

Cohen had a birthday in April too but Brett made no attempt to include me.  Granted, they only had him for a couple of hours after school but a quick phonecall would have been nice now that skype and facetime calls seem to be too much trouble to organise for Brett.  I sought out Stacey on Facebook so that I could at least find a couple of birthday photos of Cohen.  We have not been on each other's friend list for over a year.  He is 8 years old now.

The Lightning Process Does not cure M.E.

This is in reply to my sister who suggested I reprogram my neural pathways by following up on this web page by Ian Cleary.  Ian Cleary is another person who trains people in the use of the Lightning Process (LP). He is coming to a town near you in Australia.  I have not heard much about the Lightning Process but I keep calling it the Lightening Process because it seems to me to be a form of self-talk that helps change your attitude to something you are experiencing as unpleasant.  It perhaps aims to lighten the psychological load?  If that is what it is then I would suggest it as a coping tool but certainly not as a cure.  Having said that, I probably would not suggest it at all because anyone who charges $$$$ in a group situation for something that most people (the ones claimed to need it) have already learned as a consequence of life is obviously disguising the true nature of the course.

People learn to minimize their pain (all types) by a variety of self-talk techniques.  You pick them up on your way through the books on Healing and self-development that you buried yourself in when you first tried to learn how to cope with Chronic Illness.  After a while, you begin to create your own technique that you can call on when you need it.  We minimize our own pain with self-talk, spiritual talk, meditation, relaxation and things like LP, NLP, EFT and on it goes.  Most of us with true M.E. who have become "seasoned" cases have just about exhausted our ability to learn any more coping mechanisms because now we have cognitive decline way beyond that of our more normal peers.

We are so exhausted that we just let things BE.  Often that is enough. Naturally, we'd prefer to get some real help (as opposed to just another coping tool) because we all so desperately want to be cured rather than in a state of "peaceful acceptance".   We still dream about camping, going overseas and having a social life.  You cannot stop that unless your are clinically depressed and then you would not care about your lack of worldy activity would you?  You (my readers) would dream too if it was you who had a disease that blurs the lines of mind-body medicine by getting down to a biological condition that can change your mind's perception of pain.  But that is only one theory.  The Glia story has yet to mature but we know there is something profoundly wrong with the CNS of people with M.E. (from autopsy) and it is remitting and relapsing just at the times the viral load increases and decreases (my opinion).  It is incredible that anti-retrovirals have not until now been tried on people with the severe case of CFS that is really M.E.(by definition).  I believe I am of that "viral" sub-type.  I believe it started with glandular fever.  Childhood tonsilitis may have played a role.  Oral sabin for polio may have had implications but I am not going to delve into those areas of research today.  But I believe I am sensitive to viruses.

For instance I know my son brought something into this house for a few days that the "normal" person would not have noticed -perhaps a slight increase in fatigue for a few days - but despite minute concentrations of the virus that caused those bad days, most people would not know that it was a virus.  They would not even think about a virus.  They would just keep on living and push past it.  No time off needed for them.  On the other hand if viral M.E is what you have, then no amount of LP is going to change the fact that those few germs your body is fighting off has triggered an all-out battle in the auto-immune-system wars.  I believe that has been my story since I first got married if not before.  I believe my life's dramas have also taken a toll on my adrenal system but if you read the following article, which I am just about to read, you will understand why I do not have much of a reason to bother with paying to learn the Lightening Process or the Lightning Process.  I would rather buy a mobility scooter like a good girl guide who's motto is to "be prepared".



I tried out a Pride Go-Go  Extra Light  yesterday at $1890 as an in home demo but it was bumpy.  I am told none of them have suspension in the pull apart type.  I managed it but it would be no good even around my local streets with their undulating footpaths and bumps down each curb. My street does not even have a footpath.  We do have bike lanes I guess.  It would be great for the shops and the flat paths and boardwalks and the grass is OK.  I tried it.  I had to go up the grass to get to a neighbouring driveway because mine has such a dip the scooter would not handle it.  My car hits bottom there too (or the tow bar).  I was dizzy yesterday and it made me feel carsick just zooming on the scooter but I am ultra dizzy today and now I know it is coming from my back/neck.  You should read about the Lightning Process not listen to me.

The Lightning Process did not work for me. I did the training with Phil Parker himself in Crouch End, London, in November 2006. Not only did it not cure me of my CFS/ME, but it actually initiated a relapse and left me much more ill than I had been prior to starting it. This relapse lasted at least a year and a half, and I have no way of knowing what permanent damage doing the LP may have done to my body and health.

The Lightning Process is billed as a training programme, although the website does not tell you anything about the content of the course. You have to actually undertake the course in order to find out what is involved. You are also instructed not to talk about it afterwards with anyone, including fellow sufferers. My training took place in 3 hour sessions over 3 consecutive days in London, along with 4 other ME sufferers, and cost £560. There was a CD to buy for £20 at the end of the course and follow up phone calls cost £50.

It is a psychological technique. Like Reverse and Mickel Therapies, the LP website is careful to say that ME/CFS is a physical illness, thus ensuring that sufferers will pay attention, but it does not say that the technique is entirely psychological. They provide an explanation about the adrenaline cycle making you ill but it does not appear to be backed up by any actual scientific evidence relating it to ME/CFS.

I completely believed in the LP philosophy at the time I did it and was committed to doing the Process. I did experience some difference in myself in the 5 weeks after doing the training. I wouldn't say I felt better but I was doing much more than usual (as it turned out, far too much) and my sleep quality was improved during that time. But I became very ill again, literally overnight, and I was left feeling much worse than I had been prior to starting the Process. I tried hard but no amount of doing the Process was able to reverse the relapse.

The website says LP was developed using techniques from Neuro Linguistic Programming, osteopathy, self hypnosis and life coaching. However, there is no osteopathic element involved at all. My interpretation of it is as a Mind over Matter technique, akin to the 'psyching up' process that I usually have to do in order to achieve short-term goals, such as going out to the shop or an appointment, or even just getting out of bed in the morning. However the LP encourages you to employ that technique all the time. I know it can work in the short-term but it is not sustainable for any length of time.

LP claims to decrease the excessive adrenaline levels which are causing one to feel ill. However, the effect of the training was to 'psyche me up', virtually constantly for 5 weeks, until my body could obviously sustain it no longer and I crashed overnight into a relapse. I was 'buzzing' during those five weeks; my adrenaline levels must have been dramatically elevated not reduced. During the three sessions I was encouraged and persuaded to believe that there was nothing actually wrong with me and that I could 'coach' myself back to health. Phil told us that we were not really ill but had got trapped into a cycle of thinking and believing that we are ill which sustains itself - i.e. if you concentrate on your symptoms all the time, then you're going to keep having them. You are instructed to stop thinking about your symptoms and to get on with "living the life you love". I was to think of myself as healthy and behave as if I was healthy, ignoring the symptoms and "getting on with it". I trusted in this advice and followed it completely, and as it turned out, to my severe detriment.

My relapse was obviously caused by drastically overdoing it physically in the following five weeks. As an example, on the first day, after our 3 hour morning session, Phil asked the five of us what we were going to do that afternoon. Predictably we all answered that we would be resting up in preparation for the next day's session. He said that was very dull considering there was so much to do in London. As a result, I changed my plan of spending the remainder of the day in my hotel resting and instead visited a tourist site in the afternoon. He asked us next day what we had done and, as I had been most ambitious in what I did, I was singled out and praised. One of the others had gone for a long walk and he was also commended for that. No account was taken of actually how fit or well enough we were to do these things....READ MORE (opens a new window)

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Can you complete an activity reliably, repeatedly and safely?

........to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity." Ref:


Good words to remember when applying for disability services so I pasted them in for my telephone interview with Kabbarli.  Am I reliably, repeatedly and safely able to vacuum for instance?


Am I reliably, repeatedly and safely able to walk further than to the toilet and back?  If not maybe I should buy one of these.  It's been a bad year when you find yourself thinking mobility instead of campervaning.

travelscoot

Kaye found an even better (and more expensive) portable scooter called the Luggie.  Watch the video on that page.  Looks brilliant but heavier.