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ME/CFS Awareness 2010

Tomorrow is ME/CFS Awareness Day. What does ME/CFS stand for?

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome

Laurel’s October 2009 CFS/CFS Advisory Committee testimony

The following is the May 10, 2010 testimony of Annette Whittemore of the Whittemore Peterson Institute:

ME/CFS patients are faced with daunting challenges. Hopefully generating awareness about ME/CFS will be helpful.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: ME/CFS Awareness 2010

13 comments

1 Toni BernhardNo Gravatar { 05.11.10 at 3:49 pm }

I just wanted to thank you, Jeanne, for posting on ME/CFS because I know this is a blog for people with any kind of chronic illness. It’s so crucial to raise awareness of ME/CFS because until there’s more research to separate out the different subsets, little work will be done to find either treatments or a cure.

I suffer from debilitating CFS but have yet to hear of two people who have the exact same symptoms. Most experts now believe it is as many as six different illnesses, but the research money isn’t available to do the work that needs to be done.

Thanks for doing your part to raise awareness.

2 JeanneNo Gravatar { 05.11.10 at 6:54 pm }

Toni,

You don’t need to thank me. 😉

While I did know of a couple of people from my local endometriosis support group who have ME/CFS from before I started blogging in 2008, I have since met several people online who have it.

Last spring, I “met” Andrea Martell (online). It was March and I was working very hard on Endometriosis Awareness Month on Twitter… back before I closed my Twitter account (see Why I Left Twitter).

Anyhow, one day Andrea just jumped in and started spreading endometriosis awareness information like wildfire. 🙂 How cool is that? I quickly learned that she was in the process of ramping up in preparation for working on ME/CFS awareness in May 2009. I began re-tweeting about her Blue Ribbon Campaign.

The next thing you know, Andrea’s friends started pitching in with Endometriosis Awareness Month. It was amazing. All of a sudden there were several very diligent people helping spread the word about endometriosis. Needless to say, my friends and I (who have endometriosis) wanted to do what we could to re-pay the favor… not to mention that it is a good cause that needs awareness. So, we all promoted endometriosis and ME/CFS aggressively.

Andrea had a contest on Twitter where the number of Blue Ribbon Campaign tweets was tracked. I even came in second place tweeting for ME/CFS last year. 😉

I learned a quite a bit about ME/CFS last spring. I knew random bits and pieces about it before that. I have to give Andrea the most credit for opening my eyes to details about ME/CFS that I hadn’t grasped before. Even though I know people “in real life” who have it, they are all people I know from the local endometriosis support group… which means that none of them is housebound (at least not housebound on a long-term basis like so many of the ME/CFS patients I’ve come to know online).

So, meeting Andrea was when I really started to get a better grasp on just how debilitating ME/CFS could be. Having conversations with Andrea about issues like shower chairs (I was telling her how much it had helped me take safe showers despite my severe dizziness and neuropathy issues that were really bad at the time) were insights into the day to day details that affect some ME/CFS patients.

The other thing that ties endometriosis and ME/CFS together for me is that both conditions are in desperate need of research. Also, in Traditional Chinese Medicine, endometriosis is believed to be numerous illnesses (6 is actually a number I’ve heard for that too).

So, having lived with endometriosis for 28 years… I can relate to ME/CFS patients in the aspect that there is a wide spectrum within patients diagnosed with endometriosis as well. No two patients are alike. Symptoms can vary quite a bit from person to person.

Since I have so many different chronic illnesses, I’ve been able to see patterns and common links between many of them (not just specific symptoms… but how chronic illnesses have some universal effects such as patients not being taken seriously… especially with invisible illnesses). I’ve come to realize that however different our symptoms may be than someone with a different illness/different symptom set (or with the same illness but different symptoms), we have far more in common with each other than it might seem.

The example I described above where Andrea and I “teamed up”, so to speak, to spread awareness about endometriosis and ME/CFS was a win-win situation. We were able to accomplish dissemination of more information than would have been possible otherwise – by helping out each other’s awareness campaigns – than if we’d each focused on just our own campaigns. Andrea’s friends and my friends all worked on both campaigns. On any given day, we had about 10 people tweeting for awareness rather than 5.

So, I wouldn’t dream of letting ME/CFS Awareness go by without giving a shout-out. As far as my blog being for people with any kind of chronic illness, it’s for anyone who wishes to read it. I wish I had more hours in the day because I have far more ideas to write about than I’m ever able to post. The vast majority of my posts on specific conditions are on ones I have myself. I know far more about fibromyalgia, interstitial cystitis, and endometriosis… for example… than I do about ME/CFS. So, I write about them more often.

There are some illnesses that affect me daily (i.e. multiple chemical sensitivity) that I don’t write about anywhere near as often as I would ideally like to. In the case of MCS, I just send traffic over to Susie Collins at The Canary Report because her site is so amazing!

I wish I could write about more than what I do. Unfortunately, I have myself spread pretty thin as far as the number of topics I write about regularly. I try to help out with awareness campaigns as best I can. I have a difficult time keeping up with them all. I’m afraid I don’t write about ME/CFS as often as I’d like to simply because I have a difficult time keeping up with writing about my own illnesses. I do occasionally write about ME/CFS outside of awareness week, though. I think it’s really important to shine a light on topics that need attention and awareness.

I am not sure if it is coincidence or not but I know of several people who have both endometriosis and ME/CFS. Since endometriosis is believed to be an immunological disease (among other things) and since ME/CFS is considered a neuro-immune disease, I don’t know if there is some sort of immunological vulnerability that overlaps into both patient populations. (That is pure conjecture on my part. I just find it interesting how many people I know who have endo and ME/CFS).

All I know is that I believe it’s critical for researchers to look at connections between illnesses that have significant overlap.

Take care,

Jeanne

3 Fibromyalgia Awareness Day 2010 — ChronicHealing.com { 05.12.10 at 4:14 pm }

[…] At this point I would like to include a link to a 2008 post I wrote about fibromyalgia. It includes videos of a husband whose wife had fibromyalgia and died, as explained in his videos. In the first video, he refers to a New York Times article that enraged many in the fibromyalgia community (myself included). My letter to the editor of the New York Times is included in the 2008 post linked below. (Please note: Lisa’s husband refers to fibromyalgia and “chronic fatigue” almost interchangeably in his videos. ME/CFS and fibromyalgia are two separate diagnoses. For more information on ME/CFS, please see yesterday’s post ME/CFS Awareness 2010). […]

4 Matthew SmithNo Gravatar { 05.14.10 at 6:24 pm }

Hi there,

I got referred to here through your recent comments at Rellacafa, particularly the “no make-up” post. Sadly, I don’t think my contribution to the “naked face” photo collection would count for much! Anyway, I’ve got a beard.

In the UK, this is ME Awareness Week and sadly, the whole thing has been snowed under with general election coverage – as you might know we had an election last week which led to a hung parliament, so it took until the middle of this week to actually get a government. People’s awareness of ME was raised a bit earlier this year because of the trial of a mother (Kay Gilderdale) for the attempted murder of her daughter (Lynn “Jessie” Gilderdale) who had a particularly severe and complicated case of ME, but this got lost in a big debate about assisted dying, and now ME Awareness Week has been lost in all the electioneering!

If anyone’s interested, a book was published last month for people with severe ME – it’s called “Severe ME/CFS: A Guide for Living”, by Emily Collingridge and published by the British ME charity, AYME (Association for Young People with ME). It’s mainly aimed at British sufferers because there are lots of references to products and suppliers which are only relevant in the UK, but some of the information will be relevant to anyone in the world with severe ME. You can find details of it at severeme.info.

Incidentally, Emily Collingridge has very severe ME herself and had a major deterioration in her condition a couple of weeks ago.

5 JeanneNo Gravatar { 05.15.10 at 3:02 am }

Hi Matthew,

Yes, I just commented on Hayley’s Rellacafa blog earlier today (Readers, please see the post Matthew referenced here) and was happy to see that she had linked back to my post on Multiple Chemical Sensitivity Awareness Month (one of many conditions with awareness months or weeks going on now).

Yes, ME/CFS Awareness is going on for a week some places and for a day (May 12th) other places. It’s too bad that ME Awareness in the UK is getting less attention due to media coverage of other issues. While the timing is unfortunate, my philosophy with awareness weeks and months is that awareness is important year-round. I realize that certain opportunities can exist during an awareness week/month (especially with the media… that likes to focus on such issues more so during their “designated” awareness times than at other times. However, I believe awareness should be worked on constantly for conditions that are too important to cram into a day’s/week’s/month’s worth of news time.

I was not familiar with AYME (Association for Young People with ME). So, thank you for mentioning that. Also, I hope that Emily can somehow improve symptom-wise as soon as possible.

Thank you.

Jeanne

6 EndochickNo Gravatar { 05.19.10 at 11:01 pm }

Jeanne,

ME/CFS is a recognized autoimmune disorder, and you would think that it would get broader attention and more research opportunities and money allocated towards it. Of course, it, like endometriosis, is chronic but not deadly. That’s a terrible mentality to have, but it’s fact. We need to change this, somehow.
.-= Endochick´s last blog ..Endometriosis Patients Needed =-.

7 Jannie FunsterNo Gravatar { 05.26.10 at 4:56 pm }

Lately in my ME /CFS research I have watched that very video. It moved me so much and TOTALLY raised my awareness of this disease.

And I’m a bit late with my current post, but it all helps, I hope.

Xo
.-= Jannie Funster´s last blog ..ME / CFS Phoenix Rising Video =-.

8 JeanneNo Gravatar { 05.27.10 at 2:51 pm }

Endochick,

I’m sorry your comment got held up in moderation. I had messaged a couple of ME/CFS patients/activists to ask them whether or not ME/CFS is classified as an “autoimmune” disease. I have often read it described as a neuro-immunological disease. I’m not certain whether it is or isn’t considered autoimmune.

It’s true that it’s chronic. However, ME/CFS can be deadly.

See video below for more details:

What happened to Sophia Mirza who died from ME/CFS

ME/CFS absolutely needs more awareness and more research dollars. The sad stories I’ve read about ME/CFS haunt me. They truly do.

Jeanne

9 JeanneNo Gravatar { 05.27.10 at 3:50 pm }

Jannie,

Yes, in the last couple of years I have learned a fair amount about ME/CFS and I have watched several riveting videos that just haunt me. The injustice done to ME/CFS patients cannot be overstated. I am in my infancy of understanding ME/CFS but I know much more about it now than I did two years ago. The more I learn, the more disturbed I get that governments are not doing more for patients with this very serious illness. Sadly, many governments seem to actually be HINDERING progress.

The fact that the United States has not banned blood donations by ME/CFS patients when so many other countries have done so is troubling to me. One would think the discovery of a retrovirus in nearly all of the patients in a ME/CFS study would prompt the government to take steps to potentially prevent the transmission of this retrovirus via the blood supply. It’s really scary.

The fact that ME/CFS patients worldwide are so often treated as if this is a psychosomatic illness when autopsies have been performed to show massive damage to the spinal cord from ME/CFS just astounds me.

This illness needs major research dollars. These patients need treatment options, understanding, validation, and relief.

The very fact that the United States uses the term “Chronic Fatigue Syndrome” and shies away from the term M.E. is disturbing to me.

The more I learn about the suffering (and even abuse) of ME/CFS patients, the more troubled I get. It’s just plain wrong.

I haven’t seen your post yet but I will.

Thank you, Jannie!

Jeanne

xo

10 Matthew SmithNo Gravatar { 05.27.10 at 5:26 pm }

Hi again Jeanne,

The thing with this retrovirus is that it is far from certain that it is the cause of ME. The illness has very distinct similarities to polio, notably the way the muscles fatigue and burn out, sometimes permanently, with overexertion. There was a book published in 1996 called ME: The New Plague by Jane Colby, a former head-teacher in England who had severe ME for four years, and she (and the doctor who diagnosed her) said that aspects of the way ME works is easily recognisable to any doctor who had worked with polio cases; however, by the late 1980s, polio had been gone for the UK for nearly 30 years, which is how psychological theories were able to become established. Polio is caused by an enterovirus (gut virus).

As for the blood donation situation, a fair number of ME patients simply wouldn’t be able to get to the blood donation centre, or justify the journey if they just about could. Besides, nobody with a debilitating illness of unknown origin should be giving blood anyway, retrovirus or no retrovirus (and ME has often occurred in clusters). Blood donations from people with ME should have been banned many years ago.

The abuse situation is shocking. I don’t know how bad the situation still is but what happened to Lynn Gilderdale was even worse than what was reported. I wrote this article based on things one of her online friends told me.

11 JeanneNo Gravatar { 05.28.10 at 12:31 am }

Matthew,

Yes, I am aware that the retrovirus is a relatively new discovery and that much more research needs to be done regarding it. From what I have read, any of the very few studies done since claiming to try to replicate that breakthrough retrovirus study sounded, to me anyway, to be biased. It just sounded to me like the small number of follow-up studies were not conducted properly. I totally understand that the retrovirus has not been proven as a “cause” and I am one to be very careful using words like cause. To me, until there is peer-reviewed research that supports anything as a cause, I would be the last person to jump to any conclusions about cause(s). I apologize if I implied otherwise.

I have heard, in passing, polio and ME/CFS compared before. My 90 year old grandmother contracted polio when she was young. She recovered almost completely after a long and unpleasant hospital stay as a child. (She had an “iron lung” and it didn’t sound pleasant). While she has worn special shoes her whole life since and has had a limp, she did regain the ability to walk. She lived a relatively normal life for many years. As she got older, she began having some symptoms that prompted medical attention. She was subsequently diagnosed with Post-polio syndrome. (She is now in a wheelchair).

I am familiar with my grandmother’s situation, with the post-polio syndrome, and of how important it became for her not to over-exert her muscles. I can see where ME/CFS and polio would be compared regarding the way the muscles act.

As far as the blood donation, I totally understand that many ME/CFS patients wouldn’t be able to get to a donation center or wouldn’t dream of donating blood (for a multitude of reasons). I agree that nobody with a debilitating illness of unknown origin should be donating blood (regardless of whether a retrovirus is a factor). I am aware that ME has occurred in clusters too. I agree that blood donations from patients with ME/CFS should have been banned long ago world-wide.

Regardless of the fact that more severely affected ME/CFS patients are highly unlikely to attempt donation — if not prohibited (by their health problems) from making it to a donation center by virtue of the illness itself — there are less severely affected ME/CFS patients – and patients experiencing a remission of symptoms (which does not necessarily mean they are appropriate candidates for blood donation) – who could currently donate in the U.S. since there is no ban. I find that alarming.

Years ago, I used to regularly donate blood. This was when I only had one chronic illness (still undiagnosed). I did my first blood donation in a high school blood drive. As my chronic illness symptoms kicked in at age 13 and as this blood drive took place when I was 16 years old, I was already chronically ill (not with ME/CFS but with another illness that still has no established/agreed-upon cause). It never in a million years occurred to me that I might be making others sick by donating my blood! 🙁 In fact, I wasn’t diagnosed with that illness until age 23 (7 years after I began donating blood). I was trying to do a good thing. I am not a squeamish person. Needles and the sight of blood didn’t freak me out as they did some of my classmates. The teachers at school were encouraging students who were old enough to donate. So, I did.

Years later, after my diagnosis at age 23 (with an illness badly in need of research), I started reading voraciously about my condition. In the course of doing so, I became concerned about whether or not there was a chance I might be passing something unhealthy along in blood donations. By this point, I was getting deferred for donation because my iron count kept coming up too low. To make a long story short… I stopped donating for two reasons:

1) I was unsure of whether it was safe for other patients for me to donate my blood to them.
2) I needed the iron for myself.

It became apparent to me that just because they weren’t deferring me based on my health condition itself and just because they weren’t screening my blood looking for something unhealthy associated with my illness didn’t necessarily mean I should be donating! It became clear that until VERY HARD PROOF hit them over the head that my blood was not safe, they’d happily take it (unless my iron was too low and they couldn’t take it). They were so aggressive (calling my house every 7 weeks to set up an appointment for me to come in as soon as I crossed the 8 week minimum between donations. I finally decided that I was no longer comfortable donating blood. I sincerely hope there will never come a day when it’s discovered that my past blood donations could have led to anyone becoming sick! I truly hope that never happens!

Yes, the abuse of ME/CFS patients truly is shocking. The more I read about ME/CFS, the more haunted I am by the situations (patients untreated, other patients given harmful “treatments”, patients locked up on psychiatric units – or “sectioned” – as they call it in England, patients treated for psychosomatic conditions when they clearly have a physiological condition, what happened to Sophia Mirza, etc.)

The abuse of Lynn Gilderdale by medical “professionals” (referenced in your post) was just appalling. Who could blame her for not trusting hospitals?? It makes me very sad.

In the time I have been writing a blog, I have come to know many ME/CFS patients. I also have a few ME/CFS patients that I know in real life because they were in my (local) endometriosis support group. My online ME/CFS friends tend to have more severe cases. The people I know locally who have it are people I met at support group meetings for endometriosis. Just the very fact that they were ever able to make it out of the house to support group meeting(s) seems to skew them into less severe cases (relatively speaking) than the housebound patients I’ve “met” online.

ME/CFS patients are often so sick that it’s difficult for them to be as aggressively activist as they might wish to be (which doesn’t stop them from trying valiantly)! Their loved ones are typically busy acting as carers. Therefore, it becomes that much harder for ME/CFS to get the funding and research it deserves… simply because patients and caregivers are forced to use most of their energy on day-to-day functioning.

Jeanne

12 Matthew SmithNo Gravatar { 06.01.10 at 6:34 pm }

Wow, your story about blood donation and being harassed, pretty much, for more donations is pretty scary. I have thyroid deficiency and I’ve heard it said that my blood would not be any use to them anyway, but having never given blood, I’ve never been asked for it (and perhaps they don’t do that in the UK anyway).

I found what I read about Lynn/Jessie’s abuse quite upsetting. I spoke to one of her friends over Skype after the end of her Mum’s trial in January and she seemed to find describing Jessie’s life conditions quite distressing, and there were little things like the fact that she couldn’t hug her mother (who did everything for her). She told me that Jessie had been raped while in hospital, presumably early on in her illness as her parents stayed with her in later years as she was terrified of hospitals and medical staff and once asked on entering a hospital, “are they [the nurses] going to hit me?”. Nonetheless, she had to go in numerous times although, in the last year, she said she would never go in again.

I had this impression of that woman lying there with all that pain inside her (and I don’t mean physical pain although she had a great deal of that too) and having to deal with it all alone, with no real distraction as everything made her ill. There is a line in her blog article which appeared in the British press, telling her friends that she wanted to die, that read “imagine being unable to get the spinning thoughts out of your head, other than by slowly typing e-mails”, which indicates that it was more than a case of “she couldn’t deal with the pain so she killed herself” which is what the press seemed to be making out.

13 JeanneNo Gravatar { 06.02.10 at 12:24 pm }

Matthew,

They are pretty aggressive here about the blood donations. Once you’ve donated ever, they have your contact information and they call with reminders and to set up appointments. I was a teenager at the time I started donating and somehow my mother always ended up answering the phone when they called. She used to get annoyed at how persistent they’d be. If they didn’t make direct contact (i.e. speak to me directly and try to set up an appointment), they’d call back in that next day or two. I believe the people who make their calls get paid a commission based on how many appointments they set up. Being that I was a busy teenager and there was no need to set up an appointment, I told them the same thing when they called every 8 weeks… “I’ll just stop in when it’s convenient but I’m not going to set up an appointment because I don’t know when that will be”. Dropping in at the donation center was not a big deal because there was rarely a line ahead of me to wait in. So, I just went when it worked out for my schedule.

Yes, it was very upsetting to read about Lynn Gilderdale (screen name Jessie)’s abuse. I can only imagine that her friend found it distressing to describe her very difficult, painful situation. I don’t pretend to have a clue of what Lynn’s pain was like and reading her story just absolutely breaks my heart.

I do know what it’s like not to be able to hug loved ones because there have been times over the years (primarily due to my fibromyalgia) that I have not been able to do so myself during flare-ups. It was just too painful. I can’t imagine that being a permanent state. I really can’t fathom it. It’s so sad. I know how much it hurts not to be able to do such a simple thing (hug a loved one). It’s awful.

I had read about the abuse Lynn endured when she was in the hospital and it is just totally appalling. Who could blame her for not wanting to go to the hospital after having suffered such abuse there??

Years ago I was hospitalized and there were individuals on the hospital staff who were abusive to me (in various ways). At the time, I was being given medications that ended up sedating me. So, I was in and out of full consciousness but I do clearly remember a couple of incidents that happened and, well, it was not good. I was in the hospital for several days and my husband showed up one morning (at the earliest time they would allow visitors) to find me crying hysterically and agitated.

To make a long story short, he arrived shortly after I had woken up to find marks all over my arms from needles. Picture the arms of a drug addict and that it what my arms looked like. I have always been told I have “good veins”. (Back in the blood donation days, they always got the needle in on the first shot and always commented about what “good veins” I have. I’ve had seven surgeries/countless procedures requiring an IV… and the IV nurse always says this too).

My point being that there was absolutely no reason for me to have needle marks all up and down my arms! I was obviously sedated pretty heavily when they did this to me because I did not wake up until it was all over.

My husband, who is my health care proxy, was furious and marched out to the nurse’s station demanding to speak to the head nurse. Absolutely livid, he asked why they had not called him (my health care proxy) if I was incapacitated (fully unconscious/sedated) when this blood work (or careless/needless stabbing of my arms with needles) was done.

The nurse then got flustered and started stammering… admitting that they “didn’t know I had a health care proxy form set up”. (They apparently assumed I didn’t because I was in my early 30s at the time and it’s a bit unusual for someone that age to have one… but I had been through enough health crises by that point to have one… and it was on file at that very hospital if they had simply checked their own records!) In any event, the hospital could have been in big legal trouble for all the things that they did to me when I was there and they got quite shaken when my husband read the head nurse the riot act.

In any event, my point for bringing this up is that I know from personal experience what it is like to fear going to the hospital. I have lived it and it is a terrible feeling to fear a place that should be safe and might very well be needed at some point. In my case, I had to see a doctor (as an outpatient) who works in that same hospital (long story but I really needed to go there for treatment versus elsewhere). Every time I went for an appointment, I had to walk right into the same part of the hospital where I had been treated (and abused) as an inpatient because my doctor’s office is located quite close to that area. My stomach used to churn just walking up to that building. Literally, the sight of the building made me nauseous. It was really terrible. Ten years later, I am still walking that path to see the doctor there. It isn’t as scary as it once was but it’s still not my favorite place to be. It is so sad that a place that is supposed to help people can have a very dark side to it like this.

Lynn’s description of “being unable to get the spinning thoughts out of your head, other than by slowly typing emails” really does give some insight into how difficult it must have been for her. The media (not just the British media but the media just about anywhere, I would imagine) has a tendency to put a certain spin on things that often doesn’t really capture the true nature of the story. I daresay no one healthy enough to be making a living as a reporter is likely to have a tiny clue what it is like to suffer the way it is described that Lynn did (based on her own personal account that’s documented and based on what her friends and family have been quoted as saying).

I think it is easy for people who have no understanding of a situation like Lynn’s (which transcended what most people think of regarding chronic pain and chronic illness into a life where she couldn’t roll over in bed without breaking bones, couldn’t feed herself, couldn’t have light in the room, couldn’t have her own mother in the room for more than a few minutes at a time, etc.) to misunderstand or judge her. The sad fact is that there are many people (not just with ME/CFS) with very severe chronic pain/chronic illness out there who are living an existence that is probably roughly equivalent to the hell that Lynn lived in.

They are not getting the treatment that they need for various political and financial reasons and it is a crying shame. One can only hope that by raising awareness of illnesses such as ME/CFS, more money will be allocated to much-needed research, there will be a better understanding of the cause of it (and other) “mystery illnesses”, and steps will be taken for finding treatment options and eventually a cure for this and other devastating illnesses.

I hope that Lynn’s family has been able to find some sort of peace after everything that has happened. They’ve been through so much. I cannot even imagine.

Jeanne

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