Saturday, 31 December 2016

Hydro-ease - My First Float

Earlier this year I booked "a float" with the lovely Vivian of Hydro-ease.  



The idea is that you take an hour (or more) to float in a warm bath of Epsom salts.  The water is kept at an even body temperature, and because of the high salt content you really do float.  The feeling is incredibly relaxing, and wonderfully indulgent.

Before I took the plunge, Vivian enthusiastically explained the whole system to me, and outlined some of the benefits of the weightless sensation, and the deep relaxation that results.  She explained that the experience is almost womb-like, and to get as close to that experience as possible, it is quite acceptable to wear nothing!  I laughed, and showed her the new swimsuit I'd bought online!

There are two float units at Hydro-ease. The one I used was lit with a gentle pink light. The private changing area has a light controlled by a movement sensor, so it goes out once you start floating. Inside the float tank you have the option of either relaxing in the soft low light inside, or you can opt to float in complete darkness.


After stepping into the tank, you close the doors to keep the heat in.  Inside there is a light switch, an emergency button which will call Vivian, and also a fresh water sprayer in case you get the salt water in your eyes.

I lay back in complete darkness.  

The first few seconds felt a bit weird.  There I was finally floating - in the dark - with just myself for company, and the full knowledge that I'd be here - alone like this - for another hour.

So I stretched my arms out to feel for the sides of the tank. I found if I lay star-fish-like in the middle of the tank that I was small enough to not touch the edges, but also that I could float a little to one side and use my finger tips to bounce my floating body gently back and forth.  I did this for a while enjoying the gentle watery sounds and sensations.

Soon my mind started to wander.  I found that although my thoughts touched on many ideas, I was becoming too relaxed to dwell on any one thought for long.  I'd touch on a thought, or a concern, in my head, but then feel content enough to just leave it there.

I experimented with a few more floating positions - pencil shaped with my arms by my sides - curled up in a foetal position - tall with my arms above my head . . . but in the end I just relaxed into a neutrally comfortable sun-bathing type of position and let my mind empty.

Time drifts, and when I paused once to wonder how long I'd been floating for, I realised I had absolutely no idea, and also that it didn't matter.

Eventually a gentle sound alerted me to the fact my time was up.  I suspect by then I'd actually fallen asleep, or if not asleep was certainly in a deeply relaxed state.

I took a few deep breaths and allowed myself to wake slowly.  Vivian had told me that there was a generous time for coming round, and I was glad of that.

Vivian also recognises that after such an experience, that we don't just want to dash straight back out into the real world - so after showering and dressing I spent some time relaxing with a cup of herbal tea in her snug resting room. Ahhhhhh......


Afterwards I chatted to Vivian about her work and realised that Hydro-ease is very new venture, being just a year old.  Hydro-ease is also the first, and to date only, floatation centre in Northern Ireland and on top of the floating, Vivian also offers counselling and other therapies.


So was my session worth the cost?  

I have to say YES!  A resounding YES in fact, because I left with a totally refreshed and re-rejuvenated feeling.  Sadly however it did not change my symptoms of ME, and as a therapy it would only suit those well enough to travel, shower and change at the venue. (I would not have been well enough to try this last year.)  Yet as part of a holistic approach to wellness and self-care, I would still highly recommend it. 

I really must get myself over there for another session soon. 


And for those who were wondering about whether I went for the full womb-like foetal experience? Well, let's just say I didn't take the tags off my new swimsuit! xx

*****

Edit April 2017: I have now been back for several more floats and have even booked a series of further floats over the coming months.  I now float for 90 minutes each session instead of only 60, and this added time seems to give me a more long-lasting benefit. I also find that in the days coming up to each float, I am increasingly looking forward to the experience.  So, well worth trying, if you are considering it at all.

You can find out more about Hydro-ease here:
 FaceBook page: https://www.facebook.com/hydroease/
Website: http://www.hydro-ease.co.uk/

Note: I am in no way linked to Hydro-ease and have received no payment or benefit of any kind for writing this post. 

Thursday, 8 December 2016

Guest Post by Simone: Far too many stories like this!

Thanks to Simone for this guest post, which was inspired by the recent blog post by Rosa Rainbows:
"How me and my M.E became worse"

Simone writes:


There are far too many stories like this. People with ME/CFS are being told by many health professionals that their symptoms are just in their head and that, to get well, they need to exercise. The problem is that research is increasingly finding that on a physiological level, people with ME/CFS can be damaged by exercise. Our cells don't make ATP (energy) properly so, when it's used up by exercise, our system collapses. Many people have been made worse by either pushing their bodies to keep going with their lives or by exercising (or both).

I did graded exercise therapy two years ago (at the suggestion of my GP). I was walking for 2 minutes twice a week (I would go to the street corner and back). It would take me 45 minutes to recover from that walk, and then I'd be wiped for the rest of the day. Logic suggests that, over time, my body would gain fitness and I would be able to increase my walking duration and feel better from the walks. Instead, the opposite happened. At the end of 3 months, I still couldn't walk more than 3 minutes, and it was taking me longer and longer to recover. I wasn't feeling better, I was feeling worse. During that time, I saw a specialist who told me to increase my walking to 15 minutes a day, three times a week. I just stared at her, when she suggested it, wondering how I would do that. She must have seen the puzzlement on my face, so she (un)helpfully suggested I break it down into 5 minute chunks, and do them across the day.

Then I started reading the research into exercise with ME/CFS. Things like abnormal ATP production, lactate levels, gene expression, changes in blood metabolites following exercise. Abnormal VO2 Max test results are such a reliable indicator of ME/CFS that a 2-day cardiopulmonary exercise test (CPET) was proposed as a diagnostic test for ME/CFS, except that the test is dangerous for us in that it can take months for people to recover from (the risks are so high that they won't do the test on someone like me). Because of the risk of harm, the test isn't recommended as a diagnostic tool.

After reading the research, instead of following the advice of the doctor to increase my walks, I stopped walking... and I started to improve a little. I wasn't cured, but I wasn't getting worse anymore. (Unfortunately, months later, I got an infection and then went backwards for 6 months, but that's another story!).

At a recent international ME/CFS conference which world leading researchers attended, provocation studies (in which exercise is used in a carefully controlled way to exacerbate symptoms, and measure physiological correlates) were a key feature. These studies are like giving sugar to a bunch of diabetics, in order to understand the process of diabetes and find ways to test for and measure it. This is how exercise (& exertion generally) is being viewed by ME/CFS researchers now, like sugar to diabetics.

It is becoming increasingly acknowledged, within the research community, that ME/CFS is a hypometabolic state. Our bodies have shut down metabolism (energy production). Many think that this shut down has a protective function (to protect us from heart failure - one well known doctor has noted for 20 years that we look, in many ways, like people with functional heart failure, but that something prevents us from crossing that event horizon - from some sort immune process or something else (still many unknowns)).

Despite this, the prevailing view within the medical profession (most of whom do not keep up with the research) is still that this condition is simply caused by activity avoidance, and that people need to be encouraged to exercise to recover. So, despite the researchers viewing exercise for people with ME/CFS as sugar is to diabetics, doctors all over the world are recommending it to their patients. When their patients say that they feel worse, the doctors tell them that it's in their head, that it's a normal part of regaining fitness, and to keep going. But it isn't. It's dangerous.

Please, if you know someone with this illness, never encourage them to exercise, or to push through. If they have been misdiagnosed with ME/CFS (which frequently happens) and instead have some form of idiopathic fatigue, they may respond to exercise. But if they have ME/CFS, there is a very strong chance that they won't respond well, and that they will instead be damaged by it.

Tuesday, 13 September 2016

Petitions: Changing the world one signature at a time.

So what makes a petition massive? And how can petitions for causes like ME be promoted, so that they too gather massive attention?

One petition that received rapid popular support was the one asking for Jeremy Clarkson to be re-instated as the producer of Top Gear.  It didn't actually succeed, but apparently in just ten days it collected over a million signatures.  I guess being a huge celebrity, and a controversial one at that, can really help.

Other viral petitions have children or pets, tugging at our heart strings. They often challenge some nonsensical bureaucratic decision that offends our sense of justice. So we sign, because we all want the world to be made right.

Yet a petition, that highlights only one individual case, doesn't necessarily challenge the root cause of the issue.  The specific case may get resolved but the problem issue might remain.

It's a tricky call for petition writers. Focusing on one individual case, might elicit greater public sympathy, but focusing on the root problem - the one that changes the system for the better - doesn't always grab as much attention.

So what does all this mean for petitions about ME?

If we want petitions to move beyond ME circles then maybe the lessons from the examples above could be used to help us. Here's what I suggest:

  • If you share a petition online, add your own short comment because people respond better to individual stories.
  • If you happen to know any celebrities (or even just some-one with a huge media following) then encourage them to share your post too.
  • When you share a petition consider making your comment public, so that even people you don't know can hear your story.
  • Share that important petition more than once, because most of us don't sign the first time we see a petition.
  • Think about places beyond ME circles, where people might sign if you asked them.
Escalate the Impact!

It might seem that each petition we sign makes little impact on its own, but I think globally our message is starting to get louder.  ME advocates world over are adding their voices to the ME cause.

Soon I suspect we will create the perfect storm.  A storm that will change the whole paradigm of how ME is regarded.

The #MEAction petition of last year calling for the Lancet to review and retract the PACE Trial collected over 12,000 signatures.  It has been referenced in many subsequent letters and articles. The petition was even mentioned in the recent tribunal report that ordered Queen Mary University of London to release the PACE Trial data.

So could we be on the cusp of huge change?

Every action we take now builds on the achievements of earlier advocates, and  adds greater strength to the actions of future advocates.  ME patients can't march the streets, but we can sign petitions. We can share campaigns. We can each make a noise, each in our own way.

The #MillionsMissing demonstrations on 27th September have the potential to have a huge impact. Rows of empty shoes representing lives lost to ME will create a very dramatic image.

Right now there is massive potential for creating momentum to change how people with ME are treated, and every one of us who simply signs a petition is helping.

Your voice matters.
Your signature on a petition matters.

We matter.  

Let's let the world know it!

*********

Petitions worth signing:

The Opposing MEGA Petition:
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Two #StopGET petitions:
Both petitions are linked on this #MEAction page.  At the moment Graded Exercise Therapy is being used on children in the MAGENTA trial.  This must stop:

PETITIONS: SUSPEND ALL TRIALS OF GRADED EXERCISE THERAPY IN CHILDREN AND ADULTS WITH ME/CFS

Ongoing Dutch Petition:
ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment (MUPS = Medically Unexplained Physical Symptoms)

Please also consider endorsing Alem Mathees for a WEGO Health Award for his substantial work on questioning the PACE trial, and for successfully challenging the PACE authors to release their data.  You can give him a vote for an award at this link:
https://awards.wegohealth.com/nominees/12435 

Friday, 9 September 2016

PACE data: QMUL disclosure under FOI

So Queen Mary University of London is to release the disputed data from the PACE trial to Alem Matthees an ME patient who requested the data under the Freedom of Information Act.

http://www.qmul.ac.uk/media/news/items/smd/181216.html

And whilst the international ME community will no doubt be celebrating (I admit I have a some what inane grin on my face just now) it is sobering to think of how far reaching the recommendations for Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) have permeated the knowledge base of our health services.

If (when) the reanalysis of this data shows that these therapies are without merit, there will still be a huge amount of work required to remove GET in particular from the "go to" solutions of doctors, physios and other health care professionals.

However for now, I celebrate.

The real work will no doubt follow.

(Sorry for such a short post, but I couldn't let something like this go by without making a quick comment. :) )

PS Nearly forgot to say Thank You Thank You Thank You Alem!  xx

Monday, 8 August 2016

Who is responsible?

Who takes responsibility when National Health Service guidelines cause medical harm?

It's a serious question.  Where does the buck stop?  


I am asking because, the National Institute of Clinical Excellence (NICE) guidelines for myalgic encephalomyelitis, ME, still recommend two controversial therapies: Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT).

Actually NICE prefixes the name, ME, with "CFS" (chronic fatigue syndrome) - a shocking misnomer, that suggests patients are simply fatigued or tired.  This would appear to be an intentional attempt to belittle the disease.  It certainly doesn't indicate the potential for ME to become so severe that some patients exist in a living limbo of agonising immobility for years and even decades.

Yet General Practice doctors consult NICE guidelines, see the word "exercise" and regularly tell their ME patients to get out and starting exercising.

I too was given this advice at the start of my illness.  "Three short brisk walks a day", I was told.  It didn't work for me, and I doubt it would work for anyone with this debilitating disease.  Why would it?  One of the main problems with the disease is that exertion of any kind exacerbates all symptoms. Indeed, in my own case, trying to follow the advice I was given led only to increasing disability.

Patient groups and charities, are very aware of the problems with NICE guidelines and have often pointed out that both CBT and GET tend to do more harm than good.  The ME Association survey clearly shows that 74% of those doing GET say their symptoms are made worse.

Further, the now notorious PACE Trial which provides the so-called evidence base for GET and CBT, in fact only shows minor improvements for a small percentage of individuals.  Add to this, the fact that the methods used in the PACE trial, have been scientifically questioned, and that the authors are going to great lengths to resist releasing their data, and suddenly the evidence seems dubious.

Yet still patients are being subjected to this "exercise" paradigm.

So why is nothing changing?  Why does NICE cling to these harmful and questionable therapies?

What has happened to the medical maxim "first do no harm"?

And who is ultimately responsible for the harm being caused? 

I don't blame the doctors.  They refer to the guidelines and believe them to be the best medical information available.  They advise as they are advised.

Doctors also read media headlines, and sadly most ME news stories claim that people with ME just need to exercise and think positively in order to recover. It certainly seems like good common sense advice for the life-weary. Yet because ME has no clinically accepted biomarkers, it is easy for doctors to genuinely think the ME patients they see are just run-down. Or, conversely, to think that those who are just run-down might qualify as having the condition Chronic Fatigue Syndrome, which curiously the media always follow with the phrase "also known as ME".

One way and another, it is easy to see how confusion arises.

Yet for those who have the severely disabling, long-term, life-altering, debilitating disease of Myalgic Encephalomyelitis there can be no confusion: these patients know they have something very physically wrong with them. Any small extra thing a person with ME tries to attempt, results in flu-like payback, and potentially a ratcheting downwards of their long term health.  The disease is relentlessly cruel, stealing away the very essence of each sufferer's existence.

And for the most severely ill it seems there is little the NHS can offer.  Charities regularly get calls from concerned patients and their families, because home visits are denied, and trips to health centres or hospitals are too detrimental to the patient's well-being.

So it seems, severe ME patients are largely ignored by health services, and the NICE guidelines have few suggestions for patients reaching this state.  If patients are lucky, they are given the equivalent of palliative care to ease their symptoms, but not much else.

Yet there are many anecdotal stories of Graded Exercise Therapy being the initial trigger that sent mild or moderately ill patients hurtling into the abyss of severe ME.  I cannot understand why these worrying stories, and the reports from the charities are being so blatantly ignored.

I ask again:  Who is responsible?

****

Useful References:

NICE guidelines for CFS/ME: 
http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations

PACE Trial
: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext 

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Tom Kindlon http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf

ME Association: Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015 http://www.meassociation.org.uk/2015/05/23959/

David Tuller's articles on Virology Blog about the PACE Trial problems : Trial by Error: http://www.virology.ws/2015/10/21/trial-by-error-i/ and further articles on Virology Blog here: http://www.virology.ws/mecfs/

Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data: https://valerieeliotsmith.com/tag/pace-trial/

From Dr Mark Vink: The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review  http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php

Other posts on Just ME:

10 Things ME Patients Need NOW! March 2015
ME Awareness - Why NOT Exercise? May 2014
Graded Exercise Therapy? No Thank You! Sept 2015
The Use of Patient Blogs as a Care Resource
(My video presentation at Queens University Belfast) Sept 2015
Prof. VanNess on recent press reports Jan 2015

Thursday, 21 July 2016

Chronic Illness & "determination to recover"

The press love recovery stories where the long time ill - through sheer determination and will power - make themselves well again.  

These stories run with patient comments such as, "I was determined not to let this beat me." or "It was a very difficult journey, but I triumphed in the end."  The statements themselves are likely true, but the press will often imply that the tenacity of the patient was the major key to recovery.

So what about all the people that remain chronically, and often severely, ill?  Are they simply not determined enough to elicit their own recoveries?

Of course I understand the need for journalists to make the subject of their stories heroic, and therefore remarkable, but there must be other ways of doing this than implying that strength of character and determination alone are sufficient to overcome serious illness?

Actually this line of thinking is not just insulting to the patients who remain ill, but also to the many doctors and researchers involved in bringing effective treatments to patients.  Often the fact that a new drug, or change in treatment, coincided with the turning point in the patient's attitude is down played, and the reader is left supposing that any illness can be over come with good mental fortitude.

The message is subtle and repetitive.  It is also incredibly damaging.

Those who live with intractable chronic illnesses are often regaled with these popular recovery messages by friends and family.  Well meaning folk get convinced that recovery would be just around the corner if only the sufferer would just "think more positively" and "believe that recovery was possible"!

Worse however, is the way this concept affects attitudes wherever a chronically ill person goes!

The cynical "if only you'd try harder" attitude now seems to be the official line for benefits assessments.  The ongoing problems with Employment Support Allowance (ESA) and Personal Independence Payments (PIP) assessments being particularly problematical.

And here the media has influence again.

This time by vilifying patients by "catching them out" doing something they should not be capable of doing according to the benefits they receive.  In these articles journalists can be especially cruel, often using a photo captured in a single moment as their evidence, ignoring the fact that one single moment may not represent the real truth.

Gradually public opinion of the long-term ill and disabled changes.  The chronically ill are now labelled as either heros, or layabouts.  

Media heroes have their praises sung high.  In these stories the heroic individuals either: use their strength of will to recover from their condition; or they have a visible disability, manage to achieve something outstanding, and are described as an "inspiration to all".

Unfortunately, those who remain long term ill without much hope of recovery, and especially those who don't have immediately obvious disabilities, don't get hero treatment in the media.  Sadly it is then assumed they must fall into the category of "layabout".

This dichotomy might not be as a direct consequence of all those media spun recovery stories, but they do have influence.

Recovery stories where the patient is the hero, might appear to be applauding the character of the now smiling recovered individual, but I can't help thinking that the flip side of these stories - the implication that anyone could recover if their character was simply stronger - is unacceptable.

I'd love to see mainstream media stories focus more on the treatments themselves, and on how lives can be changed by them, than on the personal attributes and positive thinking of an individual.

Journalists - if you are reading this please consider that these stories, written with the best of intentions, are actually contributing to a bigger narrative - one that puts blame on all the chronically ill folk that don't recover.  This can also lead to less public sympathy and greater difficulty in finding funding for proper research into medical treatments.

Many of us are determined to recover.  That determination is of course fantastic. It gives us strength  to see through difficult treatments, or to campaign for change. And I've no doubt some positive thinking can help with coping with a restricted lifestyle.  However, please, let's be realistic about the place of "determination" in effective healing.

Thank you.



Sunday, 26 June 2016

ME Mortality

I have written before about the "living death" of very severe ME, and of patients clinging to life, desperately hoping for medical progress to rescue them. Sadly, some patients don't survive long enough. 


In the last weeks I have heard of the untimely deaths of five ME patients: 

Jodi Bassett, 
Louise Ramage, 
Pat Blankenship,
Tink Bastion and 
Linda Hayes Burke.  

I knew none of these ladies in real life, but their deaths nonetheless feel like a punch in the gut. 

Theirs are not the only ME deaths I've encountered either. The online ME community often morns losses from its ranks, but these five deaths, occurring in such quick succession, highlight a sensitive issue - ME mortality.

So why, knowing ME deaths occur, is ME research is still so agonizingly slow?  

Why is it still hampered by such a significant lack of government funding world over?  

Certainly, noises are being made by government bodies about future funding, but patients sense a complete lack of urgency, when it comes to seeking answers through biomedical research. 

It seems the pounds and dollars are slow to appear for the types of studies we need. 

Another question: Why do we still have publications in respectable journals that describe ME as a condition where mind-over-matter types of therapies are effective?  

Do deaths not indicate something more serious?  

There is a saying that events can become "just another statistic", but what if those statistics are never collected?  

Are the deaths of ME patients recorded? If not, why not?

The frustration that shows in my writing today is, I know, felt by many.  

I hope awareness of the urgent needs of Severe ME patients will one day be exposed.  I hope the outrage our community feels at the untimely deaths of patients like Jodi, Louise, Pat, Tink and Linda, will grow to become a public outrage.  

I hope many more who are not affected by ME will start to ask questions about our situation.

In the mean time, those of us remaining, and still able to campaign, must do all we can to bring ME to the attention of medical professionals and key health decision makers - where ever we are - world over. 

I'm doing what I can.

**********

Post Script: Brought to my attention in comments:
And a post by Jennifer Spotila on Mortality
http://www.occupycfs.com/2014/07/07/mecfs-mortality/

And from Leela - two more patients:
"Sally. I reviewed the ME/CFS Memorial Page and found that 2 other ME patients, that I didn't know, Sarah Ellis and Pam Carmichel, died in May along with Pat. So that is 7 that we know of in the last 2 months. And how many are unrecorded? "  -  Seven patients in such a short time, it is almost too much to take in. :(

Via a Twitter comment:
Causes of Death Among Patients With Chronic Fatigue Syndrome (2006)
LEONARD A. JASON, KARINA CORRADI, SARA GRESS, SARAH WILLIAMS, and SUSAN TORRES-HARDING. DePaul University, Chicago, Illinois, USA

And finally a link to my post "Living Death Disease":  http://sallyjustme.blogspot.co.uk/2014/08/living-death.html


Wednesday, 15 June 2016

The Question of Sleep! (& N:Rem tablets)

Unrefreshing sleep is a symptom of ME, and of many other long term conditions. Indeed, the topic of night-time hours (and of making them as comfortable and restorative as possible) is one that is often debated online.

Luckily for me, I was in the right place at the right time and was offered a free trial of these N:rem foam mattress toppers, in exchange for an honest review of them on my blog.

Disclosure notice: "I have been given this product as part of a product review through the Chronic Illness Bloggers (http://chronicillnessbloggers.com/chronic-illness-bloggers/) network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

Background: I had seen these mattress toppers mentioned generally favourably on various FaceBook groups, and so I understood that they worked on the principle of giving different parts of our body more or less support according to individual need. This seemed so sensible and simple, that I knew I had to give them a go.

The N:rem website can be seen here: https://nremsleepsystem.co.uk/ and the toppers viewed here: https://nremsleepsystem.co.uk/topper/

Before my month's trial, I found I could mostly sleep through the wee small hours of the night provided I went to bed an hour after midnight and then rose before seven o’clock.  Trying to stay  in bed longer did not produce more sleep - yet I also knew I needed more sleep than this short window provided. Part of my problem, I think, was discomfort making me restless. (I have been attending a chiropractor for many years to keep my back "right"!)

The trial N:Rem system consists of 5 tablets of foam, of differing densities, that can be placed over your existing mattress.  The idea is to re-arrange these tablets so that the softest ones are beneath pressure points that cause you bother, and the firmer ones are then placed to give more support to less tender areas.

On receiving the huge delivery box from the N:rem people, I immediately placed them over my mattress according to one of the patterns in the accompanying literature. I then snuggled down enthusiastically for the first night.

Sadly, that first arrangement did nothing good for my sleep whatsoever! The firmest tablet was WAY too firm for my liking.  I pulled it out and relegated it to the bottom of my bed, where my even my feet rarely reach!

Re-arranging the tablets over the next couple of nights helped me fine-tune an arrangement that suited my personal needs, and remarkably as the month of the trial progressed, I found that I was starting to sleep on longer each morning. Then I discovered that I could also head to bed earlier, and still sleep right through the small hours of the night.

The scientist in me says that this result might not be entirely due to the mattress toppers - that maybe some other factor was at play?

However, the part of me that just happens to like sleeping well, won the internal debate with the logical argument that - I was mighty pleased to get the toppers back again, after I lent them to a friend for a couple of nights!

So the end result is that I really do like this system.  However I have one very small suggestion for improvement.  I think it would be nice to have the option of a narrower piece so that I could place a small slightly firmer strip just about my waist level.

Overall Conclusion:  Thumbs Up! 

And, I’m seriously tempted to get one of their full mattress options in the near future.

****

PS I probably shouldn’t admit this - but when I took the trial on, and heard that I could keep the tablets after the trial, I remember thinking that if I really didn’t like them, that at least they would make good dogs beds!  Well I’m sorry Finn, but you lost out chum!



Saturday, 11 June 2016

Chasing Competent Care conference report



Hope 4 ME & Fibro Northern Ireland ran an ambitious and exciting conference on Monday 6th June in The Stormont Hotel, Belfast. The conference, “Chasing Competent Care” delivered a strong message calling for change to the currently inadequate care situation for ME and fibromyalgia patients in Northern Ireland.

Chairperson, Martina Marks opened the meeting, welcomed everyone and thanked the Big Lottery Fund for their sponsorship of the event. Her welcome was followed by an empassioned plea from Joan McParland, the founder and treasurer of Hope 4 ME & Fibro NI, to have medical professionals take patients’ symptoms seriously. Joan explained that she had been ill, and operating at less than 30% of her normal capacity, since 1999. In that time no effective treatments had been offered, and one consultant had even suggested she was simply reading too much into her symptoms and that she should see a psychiatrist!

Joan thanked the many volunteers and family members who made the event possible, and also the medical professionals and MLAs in the audience for taking time to attend.

Sally Burch, another charity trustee, then pointed out that ME (myalgic encephalomyelitis) and fibromyalgia are both disorders recognised by the World Health Organisation. She then explained that the most severely affected by ME could be left bed-bound, tube fed and lying in darkened rooms for weeks, months and years! She further described the severely debilitating nature of fibromyalgia and how the invisible pain that sufferers endure can have devastating life consequences. Sally outlined the symptom overlap between these conditions and suggested that biomarker development and medical research was now urgently required.

Lined up, to the side of the speakers’ podium, was a haunting display of over 200 pairs of empty shoes. These were part of the global ‪#‎MillionsMissing‬ campaign. Each pair of shoes carried a tag with the name of a patient unable to participate in their active lives due to ME and/or fibromyalgia. During the conference many attendees took time to read the comments on the tags and to consider the magnitude of the devastation caused by these largely forgotten and ignored conditions.



First speaker up was Dr Joe McVeigh, who outlined the problems with exercise and fibromyalgia. He explained that whilst exercise is important for maintaining health, that it must be conducted at a level manageable for each individual patient. He called this the “Goldilocks approach”, and explained that at no time should attempted exercise cause a patient to relapse.

Professor Malcolm Hooper next gave a strong talk berating the inadequacies and misleading conclusions of the PACE Trial. At one point, he suggested that the PACE Trial was potentially fraudulent and told us that he had once even said as much in The House of Lords. This elicited a spontaneous round of applause from the audience. Feelings run high amongst patients on the PACE trial, mostly because it has been used to support the NHS recommended therapies of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), both of which have been demonstrated to cause harm in patient surveys.


Professor Hooper questioned the motives of the PACE trial authors in promoting results that carry such marginal benefits and such great potential risks. He recommended that patients reference Dr Mark Vink’s paper, “The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review”, any time they were asked to undertake these therapies.

After this lively and well received talk, the conference paused for a comfort break. The weather was uncharacteristically balmy for Northern Ireland, and some of the audience sat outside in the evening sun as they contemplated the issues raised.

Natalie Boulton, carer to her daughter who has severe ME, spoke next. She opened by showing a clip from the video “Voices from the Shadows”, that gave the audience a disturbing insight into the annihilation caused by very severe ME. Natalie told us she had recently followed up with some of the patients from the video and found many of them had worsened, and that both Emily Collingridge and Lyn Gilderdale had since died. She spoke of the horror of the treatments doled out by psychiatrists who believed patients to be faking their illness. Hers was a genuinely moving and sobering talk.

Next Professor Mady Hornig from Columbia University, USA, gave a detailed and highly informative account of her work towards developing blood biomarkers. She explained how immunity and gut microbiota can be linked to the brain, its functioning and mood. She talked about the epigenetic changes that can occur in the microbiome during a person’s lifetime and the link to serotonin production. She also talked about measuring blood molecules such as cytokines before and after an exercise challenge in ME patients, and comparing these changes to healthy controls. These cytokines being the most promising as potential biomarkers. Although much of what she described cannot be simply summarised, the audience was left with a strong feeling that Professor Hornig is now working determinedly to solve the biochemical riddles produced by ME.

Dr Pamela Bell then took the podium to talk about the problem with pain. Dr Bell has worked extensively in the field of pain, and is now chair of the Pain Alliance Northern Ireland. She emphasised the widespread nature of chronic pain and its disabling effects, noting that once pain becomes chronic it no longer serves a useful purpose in the body. She recognised the difficulties with effectively treating ongoing pain and explained that different types of pain needed different drug types to alleviate symptoms.

The final speaker of the evening was Louise Skelly from the Patient and Client Council of Northern Ireland. She spoke of her frustration at trying to bring about change to the current impasse with Health and Social Care Board in Northern Ireland regarding the care on offer for ME and fibromyalgia patients. She spoke of her determination to follow through with the campaign to improve the situation, and of the great need of these neglected patient cohorts.

Martina Marks then brought the conference to a close. Overall the atmosphere of the evening was one of both frustration, and of optimism. Frustration that change seems to be taking so long to happen and for the injustices that have occurred along the way, but also optimism that things are starting to gain momentum towards real medical advances for the future.

As the hall emptied, the lines of lonely shoes from the #MillionsMissing campaign were gathered up, their labels still attached, and some-one was heard to say: “These are the folk we do all this for - they will not be left forgotten any longer.”
*****************

PS Edit to add copy of the letter we wrote to all attendees:



6th June 2016

Dear “Chasing Competent Care” conference attendee,

We are delighted that you have taken an interest in the currently unacceptable care situation for ME & fibromyalgia patients in Northern Ireland.

A large part of the problem is that diagnosis is difficult without accepted biomarkers, and, that there are no specialist consultant physicians in Northern Ireland to whom GPs can refer patients.

Misdiagnosis is known to be a problem in the UK1, and based on patient stories misrepresentation of these illnesses as mental health problems is prevalent.

Furthermore the NICE recommended treatments of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) that are offered for ME, are now being widely questioned, and patient reports demonstrate clear harms from GET2,3.

CBT and GET are based on the biopsychosocial premise that patients are no longer physically ill. The “PACE trial” 4 that purports to provide evidence to support these therapies is now coming under considerable scientific scrutiny5. Suspiciously, the PACE trial researchers are also refusing to share the data that would validate their claims6.

The Health and Social Care Board in Northern Ireland is currently intending to roll out a Condition Management Programme (CMP) run solely by occupational therapists without the support of a medical consultant-led clinic.

The HSCB lead commissioner for ME and Fibromyalgia services has confirmed that this CMP was initially based on the PACE trial methods. It is now clear that CBT and GET show no long term treatment benefit7, and as mentioned earlier harm from GET is widely reported2,3. The current staff of the CMP pilot are doing their utmost to help patients within their remit but they lack the support of a consultant physician with specialist biomedical knowledge.

It is time for change! Can you help us? Perhaps you could alert health service providers to the difficulties faced by ME and fibromyalgia patients? Or write to the new Health Minister to appeal for change?

The display of empty shoes at the side of the hall is part of the #MillionsMissing worldwide campaign8 orchestrated by MEAction.net. The shoes represent those who are unable to participate in normal life because of devastating long-term illness.

We urgently need the support of healthy advocates and sympathetic medical professionals so we can change the current apathy towards the plight of these patients.

Hope 4 ME & Fibro Northern Ireland9 is a registered charity run by patient volunteers. We support the scientific view that myalgic encephalomyelitis (ME) and fibromyalgia are a physical disorders, and that scientific biomedical research is our best hope towards their understanding. Thank you for taking an interest.

We hope you will help spread our message of concern. 

Best wishes,

Trustees and Committee of Hope 4 ME & Fibro Northern Ireland

References:

1. The Newcastle NHS Chronic Fatigue Syndrome Service: Not all fatigue is the same. Newton JL, Mabillard H Scott A Spickett G (2010) http://www.ncbi.nlm.nih.gov/pubmed/21132135

2. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Tom Kindlon http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf

3. ME Association: Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015 http://www.meassociation.org.uk/2015/05/23959/

4. PACE Trial: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext 5. Virology Blog: Trial by Error: http://www.virology.ws/2015/10/21/trial-by-error-i/ and further articles on Virology Blog here: http://www.virology.ws/mecfs/

6. Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data: https://valerieeliotsmith.com/tag/pace-trial/


7. The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review  http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php

8. #MillionsMissing A global day of protest for ME and CFS: http://millionsmissing.meaction.net/ with Belfast details here: http://millionsmissing.meaction.net/locations/united-kingdom/belfast/

9. Hope 4 ME & Fibro NI website: http://www.hope4mefibroni.btck.co.uk/ and Facebook announcements page: https://www.facebook.com/Hope4MEFibro/

Wednesday, 25 May 2016

#MillionsMissing & Northern Ireland

Today is 25th May and the day of the global #MillionsMissing campaign, where empty shoes are being used to represent active lives lost to ME.


These are my shoes, but they don't get the wear they deserve.  

Since March 2012 I have been unable to work, and incapable of walking normal distances.  The soles of these shoes remain without the scuffs from the paths that I might have trod since the day that I got ME. 

Of course I found other paths in life - not ones to "walk", but rather ones I've been pursuing in a more sedate manner.  This blog is one such new path.  

My activity with the charity Hope 4 ME & Fibro Northern Ireland is another.

In fact Hope 4 ME & Fibro NI are supporting #MillionsMissing campaign with an empty shoe demonstration at our up and coming conference - "Chasing Competent Care" on Monday 6th June. You may recognise the shoes in this flyer for the event!


We hope to get  a big attendance from patients, carers, medical professionals and other interested individuals.  There has been a lot of interest to date. (Click on the images below for more detail)

Care for the estimated 7,000 ME patients and some 22,000 fibromyalgia patients in Northern Ireland is almost non-existent and, where it is provided it is largely inadequate.

To quote Joan McParland:

"If you're a patient in NI and completely satisfied with your quality of life and having no hope for a better future, then just ignore and eat more cupcakes!
: the lack of a dedicated NHS Consultant
: the lack of supporting specialist NHS services
: the lack of education within the medical community
: the lack of awareness within the general public
: the fact it's almost impossible to get an accurate diagnosis
: the fact you will most likely be sent to mental health clinics
: the fact you will be advised to exercise and little else.
: the fact HSCB have done nothing since 2009 other than
agree the situation is 'frustrating.'
: the fact HSCB are insisting future NHS services will offer 
only Condition Management Programmes claiming 'many'
patients will return to work after 12 'talking treatments!'
: the fact HSCB medical advisers have reversed the decision 
to give financial support for our medical professionals 
education training events unless we solely promote NICE 
Guidelines (includes GET/CBT and little else)
: the fact parents are being put under investigation if their
child does actually get a diagnosis of ME.
: the fact, many medical professionals are interested enough 
to actually request educational material from our patient 
charity.
: the fact none of the above will change by talking, moaning, 
groaning sessions, being frustrated, being angry or just
accepting the intolerable situation. 
And more....
OR if at all able, join us in the Stormont Hotel on 6th June
OR send a family member or friend.
OR request your name be added to a pair of empty shoes here.......
OR post, deliver your empty shoes to any 'Hope' trustee, addresses available on request by PM."
*

Our event is advertised on #MEaction.net here:
http://millionsmissing.meaction.net/locations/united-kingdom/belfast/

Also you can keep up to date with Hope 4 ME & Fibro NI activities on our announcements page here:
https://www.facebook.com/Hope4MEFibro/

Please also check out the #MillionsMissing tag on Twitter. 

Thank you for your interest. 

Thursday, 12 May 2016

#May12BlogBomb Link List for 2016

Thank you to everyone who has submitted May 12th Awareness posts to #May12BlogBomb for 2016.  

Please use the #May12BlogBomb tag on social media when you share this list and blogposts from the list.

I will be accepting and collating posts during the day, and up to 5pm latest, so if you are a blogger with a post you have written that you would like to be included, please visit this post to complete the submission form .


My Awareness Posts:

Just ME: Disposable Energy?

Just ME: Some Days - All Days

Just ME: Preparing to "Princess" for Team Princess Hope (Updated)


Guest Posts on Just ME:

Just ME: Guest post from HellytheElephant - The Spoons Don't Work. . .

Just ME: Guest post by MerelyExisting is ME: I wish . . .

Just ME: Guest post from Sarah-Louise: A hashtag has just made me cry


Posts on Independent Blogs: 

A Life Less Physical: Your fibromyalgia toolkit

Alan's Album Archives: 'ME/CFS Awareness Week At Alan's Album Archives'

Artifacts of ME: What Happened with that MS Diagnosis Anyway?

Brainless Blogger: #May12BlogBomb Work compramises

carolinekaisereditor.com: A Different Kind of Tired

Chronic Fatigue & Me: 1 Week About ME

Chronic Mom: 3 things to remember during a fibro flare

Fed Up with Fatigue: What I wish others knew about fibromyalgia and ME/CFS

Fibrodaze: International Fibromyalgia Awareness Day Online Events

Fibro Warriors ~ Living Life: Why is May 12th International CFS and Fibromyalgia Awareness Day?

Grieving for me because of M.E.: Today is ME Awareness Day…..

Gwenfar's Garden: Garden visiting with ME

Jan's Place: What do we want? From a person with M.E.

Just A Spoonful Podcast: May The 12th Be With You

LENNAE'S WORLD: ME Awareness, Symptoms with ME

Katie Cupcake Life With ME: Knowing your limits does not make you negative!  

Laura's Pen: The M.E. Adventures comic: energy and exertion

LavenderDojo: Thyroid-immune interactions; rT3 and TGF-beta1

liebjabberings: ME/CFS: Writer’s personal and professional inextricably entangled

Lightening the Shadow: Seven Years May Be a Turning Point

Little Wings: Living with M.E. is like having to re-invent yourself everyday

ME/CFS Self-Help Guru: What I want you to understand about ME/CFS for May12th International Awareness Day

ME Australia: ME and CFS Awareness Week: 11 - 17 May

MEcuperating: Living with ME

Melanie Schickedanz on Huffington Post Blog: Am 12. Mai ist der internationale ME-Tag

ME Support: The Power of Creativity

motherinlawsblog: Don't roll your eyes at ME!

My Spoonie Life: Why the public opinion of M.E. needs to change

Sarah at Saje: Isolation and ME

Slightly Alive: For May 12, 2016: ME is not a "mysterious" disease.

Spoonseeker: Out of the Blue

Sue Stevenson: The Slow Rise

The Get Up and Go Guru: Never Give Up! – ME / CFS International Awareness Day 2016

The Person Who Disappeared: What is ME? A special post for ME awareness week


Trishrhymes: ME and me

Undies on the Outside: Behind the Undies on the Outside Challenge

Utting-Wolff Spouts: 12th May, how I dread this day, or: Awareness and compassion fatigue

Verbena Days: Imagine ME


****************

Previous Link Lists can be found here:

#May12BlogBomb 2015 Link List 
May 12 Blog Bomb Link List  (2014)

Guest Post from HellytheElephant: The Spoons Don't Work. . .

Over the last year, I have been reading as much as my tired and foggy little brain will let me, not only about the nuts and bolts of ME (I am all too familiar with that!), but about how to communicate the experience to the average chronic-illness-virgin. I am also a chronic pain sufferer and it is similarly difficult to explain to the average person what it is like to be in bad pain that is apparently never going to get better, and has no specific cause.

Whilst friendships with healthy people have withered and fallen like crusty brown leaves to the ground, I have made new and warm connections with the very elderly and the chronically ill. I do not kid myself that this would have been probable (or even desirable) before I became a refugee, fleeing the world of wellness and finding a safe haven with those who are generous with the little they can offer.

Nevertheless there IS a need to explain my deeply baffling illness. There are times I need to defend my corner, and need to know how to articulate the fuzziness of our illness to a ‘healthy’.

I have discovered there is a whole new vocabulary for our diminished energy supplies, the best known being the ‘Spoon Theory’. For me at least I find it frustratingly unhelpful. In brief the idea is that a bunch of spoons, real or imagined, can be used to explain how the energy of a chronically sick person is drained: Eating breakfast: one spoon gone, taking a shower, minus another spoon and so on until spread like jam on the nearest mattress-‘spoonless’.

This similie doesn’t work for the simple reason that on any given day I never know how many spoons I have to start with. Sure, I know if I have slept badly and wake grumpy and in pain, it will likely be a beast of a day, but it is not always so easy to predict. Some days are slow to get started and then I find a surprising burst of energy after my nap. Other times I feel quite good and energised first thing, only to crash at 11am and am forced to retreat to my bed for the duration. The explanation is obvious: someone is nicking my spoons!

There is also the Energy Envelope (the amount of energy I have most days would feel easily into an envelope), Energy Account ( at the bank of un-co-operative where I can never get an accurate statement and someone keeps withdrawing my money), and Marbles (as with the Spoons, how do I know how many marbles I have or use?)…and don’t get me started on losing my marbles which becomes more likely with every day that passes..

Why am I getting so steamed up about a handful of spoons, a virtual bank account and a lot of glass balls? Maybe it is because if I had a more ‘recognised’ long-term illness I would be getting treatment, not similes.

We are told we must have a new way of seeing things, a new attitude to being sick. We must work 24/7 at being ill and in addition we must advocate for ourselves in a world that is baffled by our illness, and is barely funding research to help us LIVE again.

It seems that when the medical profession can’t understand or cure something, they then turn the responsibility back to the patients. It can only be our own fault to have allowed ourselves to become ill with something that defies explanation: our punishment is to be forced to waste our minuscule energies on into ‘managing’ the unmanageable. Doctors telling us to pace more,is like the captain of the Titanic complaining that the ship is only sinking because the deckchairs are poorly arranged.

It is good that many people find the spoons etc helpful, and yes, I know most of these ideas come from patients themselves. Maybe I was just not drawn that way. I don’t believe that life can be codified so readily. Whilst there are activities that always take up a lot of energy, most things vary according to other elements that are completely outside my control: the season, time of day, other infections, my cycle,OTHER PEOPLE, receiving good/bad news, and for me how Mr H is- as there are two of us chronically ill at the elephant house. I would have to be a master statistician to analyse the spoons out of that lot!

ME is no respecter of our plans, schemes and attitudes. To paraphrase the saying ‘ ME goes on regardless, whilst you are busy making plans’

********

This post was first published on the Phoenix Rising Blog by HellytheElephant and is reproduced here with permission. The elephant picture is the one used by HellytheElephant as a profile picture.

Guest post by MerelyExisting is ME: I wish . . .


I wish…

I wish I could tell you that this past year has been a good one, that things have improved, that I was feeling better… sadly I can’t

I wish I could adequately convey to you how horrific, brutal, excruciating, crushing, overwhelming and relentless the very many multi-system symptoms of Myalgic Encephalomyelitis ME/Chronic Fatigue Syndrome CFS/Systemic Exertion Intolerance Disease SEID are

I wish you could understand how utterly unwell I feel, and how just about every part of my body is not working properly

I wish you saw the crumpled heap that I become after trying to do the very smallest of things

I wish I didn’t feel so pathetic, useless, invisible, stigmatised and guilty, even though I am fighting my hardest to get through every day

I wish that I didn’t feel like such a burden to everyone for feeling this continually unwell

I wish you could really understand how difficult trying to ‘live’ with this is

I wish I could tell you how scared I am for what the future holds

I wish I didn’t have to worry so much about my finances, and how I will manage to continue to support myself

I wish I was able to look after my elderly parents instead of them helping to look after me

I wish I was still able to work in the career that I loved

I wish I hadn’t been told that I would get better after six months, after two and a half years I can no longer keep that hope

I wish that I could sleep soundly and wake up feeling refreshed, well, to have some energy, to not feel like I have flu and a stomach bug plus a hangover and jetlag, having just run a marathon and been flattened by a steamroller all the time; to not be in constant pain, aching and stiff, that my muscles and joints worked properly, to be able to think and concentrate without my brain and body hurting, to not have throbbing headaches, searing migraines, eye pain, visual issues and sensory overload, to not have a raging sore throat, swollen glands and burning rashes, to not feel so dizzy and nauseous, to not have palpitations and my pulse pounding and racing, to not struggle with balance and co-ordination, to not have intense muscle spasms and restless limbs, to not have such problematic gut and bowels, basically to not feel like death

I wish I could walk more than a few steps without feeling that I am about to keel over or pass out

I wish I could get up and down the stairs with ease

I wish I could get showered, dressed and then be able to leave the house, and that I wasn’t either housebound or sofabound or bedbound

I wish that getting a cold or viral infection didn’t nearly finish me off

I wish I could hold conversations and laugh with family and friends without feeling really ill

I wish I could have some fun or even enjoy a bit of social life

I wish I could read a book or watch a film and remember it

I wish I could sit out in the sun

I wish I didn’t have to observe the world passing by from my window

I wish I didn’t feel so alone in having to deal with this

I wish that you knew and could see the ‘real’ me; the one that isn’t having to battle with my body every day, the one that isn’t living in pyjamas, either freezing cold or too hot, wearing earplugs and sunglasses indoors with the curtains closed, the one that isn’t struggling to remember what way is up, the one that doesn’t have to choose between making a phone call or using the computer or doing the laundry or preparing a meal or getting washed or dressed

I wish there was adequate, appropriate and proper healthcare support for ME

I wish there was much greater recognition, awareness and understanding of the immense strides in biomedical research taking place into ME

I wish that you would please do one thing and help the fight for support, awareness, understanding and research for ME

I wish that I didn’t have this horrendous, serious, complex, debilitating, chronic and misunderstood neuro-immune illness… but I do, and whilst the reality is so much worse that I am able to describe to you, no amount of wishful thinking is going to change that

My wish is that WE can start living again, and not just existing… what’s yours?




Guest post by MerelyExisting is ME @tweetsforMECFS 

For #May12BlogBomb 2016
(#May12BlogBomb 2015 post We Are Warriors )



Some of the many useful links if you want to know more about ME/CFS/SEID…

https://www.actionforme.org.uk/
http://www.hfme.org/
http://www.investinme.org/
http://www.meassociation.org.uk/
http://www.meresearch.org.uk/
http://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/
http://www.tymestrust.org/
http://www.wames.org.uk/
http://www.25megroup.org/home.html
https://batemanhornecenter.org/
http://www.canaryinacoalminefilm.com/ http://www.cdc.gov/cdcgrandrounds/archives/2016/february2016.htm http://www.cfstreatmentguide.com/national-and-international-cfsme-organizations.html http://changeformechangeforus.co.uk/
http://emerge.org.au/
http://euro-me.org/
http://www.forgottenplague.com/
http://www.hope4mefibroni.btck.co.uk/
http://iacfsme.org/
http://www.imet.ie/
http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
http://www.irishmecfs.org/
http://www.meaction.net/
http://www.me-cvsvereniging.nl/
http://med.stanford.edu/chronicfatiguesyndrome.html
http://www.me-gids.net/index.html
http://me-pedia.org/
http://www.name-us.org/index.html
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx http://www.openmedicinefoundation.org/
http://phoenixrising.me/
http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/
http://solvecfs.org/
http://www.stonebird.co.uk/
http://www.virology.ws/mecfs/
http://voicesfromtheshadowsfilm.co.uk/

Guest post by MerelyExisting is ME @tweetsforMECFS For #May12BlogBomb 2016



Guest post from Sarah-Louise: A Hashtag has just made me Cry

A hashtag has just made me cry, which seems like one of the most ridiculous sentences I have ever uttered. Yet, here I am, unable to comfort myself, while I type this.

The tag itself is ‪#‎millionsmissing‬ and it links to a protest being staged this month for the lives of those with M.E. Lives like mine. The reason I am finding it so moving, is that it articulates a part of my experience that I have never had words for, and it makes me aware of just how many others understand it too.

For years at a time, we went missing completely. Even though we were always in one place; the dark of a room, with only the most vicious dragons for our company. Every sound and beam of light was a knife cutting through us with dreadful accuracy. For thousands, and hundreds of thousands, of minutes we were static and unresponsive and silent but there was no respite for us; not for a moment, because the terrible chaos we were experiencing never needed to stop and take a breath. However much we wanted it to. Existing was so physically excruciating that it seemed impossible to continue doing so. We were in the lands between life and death where there was no one but us, and the dream of being near to other people again. A dream so beautiful and neccessary, it has sustained us.

I went missing overnight. Faded out of a life I recognised and into another I did not. I still do not. You learn, as you go along, how to be fierce enough to survive this with who you are intact. It will take everything, it will strip you to the bones and still keep raging, with no mercy in its onslaught, and you are powerless in the face of its enormity, but then you realise one day that you get to choose. You get to choose one last thing; whether or not the small spark of light that belongs to you, and you alone, is snuffed out with it. You learn how to hold on to whatever it is you believe in enough, to still keep who you are alive instead of just your body.

You will never reconcile to being missing though. You will never wake to find it normal. You are always yourself, displaced, in this terrible new place you have no maps for, waiting for your real life to come back to you. The one where you can run and dance and reach out to put your arms around those who matter.

Perhaps the hardest part is simply the lack of practical help. The doctors are as out of their depth as you are. They can offer you nothing for your pain and, invariably, they cannot treat you. So you are exposed to an illness unchecked. You must face the storm, without a shelter.

You become so very aware of how much pain there is on this planet and that there is no more reason for your miracle to come than anyone elses, and you hope it comes anyway, because this is the only span of time you will ever have.

I do not want to stay missing.

And I do not want other people's lives to go missing too.

But I have no idea how on earth to stop it from happening to someone else, when the voices most raised about it are the ones who are being made to whisper by this disease.

A guest post from Sarah-Louise Jordan for #May12BlogBomb