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Partner sites

iacfsme.org

International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis or iacfsme for short is a foundation dedicated to doing research on Chronic Fatigue Syndrome. They are champions of everything that we also fight for, so send them some love, the same one that we are getting from you.

post-polio.org

post-polio.org is community backed website which has a lot of useful information about the Post Polio Syndrome. Their website has a neat “Education” category where you can find a lot of useful information about the Post Polio Syndrome and how it might affect you without you even noticing.

ngwrc.org

Even though ngwrc.org isn’t a website dedicated entirely to those who suffer from the Gulf War Syndrome, there are many resources available there that can help veterans find the right institution dedicated to helping Gulf War veterans, where they can seek help. Check them out if you are a veteran and not sure about your situation.

Recommended reading

1.Chronic Disorders and the Family

2. Aging and Chronic Disorders

3. Chained: Youth with Chronic Disorders

4. Managing Chronic Disorders

5. Nutritional Aspects and Clinical Management of Chronic Disorders and Diseases

Home

CSSA is a non-profit organization dedicated to informing the public on various less known disorders that trouble people which don’t get enough recognition by the public or the health care industry. In fact, the disorders that CSSA tries to shine more light on are often times dismissed as not real by many people. Still, there are those of us who actually have them and who have to suffer every day. We would love nothing more than being able to one day just declare that our condition is all hogwash. Sadly that’s not how things work.

Latest articles

When does regular pain turn into chronic pain?

Hey there everybody. A question that we here at CSSA often get asked is what is the difference between pain, meaning regular pain, chronic pain, …

Claire Flores
June 29, 2019

Why does fibromyalgia affect women more than it does men?

Fibromyalgia is one of the most represented conditions amongst the CSSA membership. Out of the about 40 people that are members of CSSA who have …

Claire Flores
February 13, 2018

Conquering Your Child’s Chronic Pain: A Pediatrician’s Guide for Reclaiming a Normal Childhood

If there is one thing obvious about books that deal with the topics of chronic pain it's that their titles are super long. Today we're …

Claire Flores
February 12, 2018

Famous people with chronic syndromes – Lady Gaga

I don't know if you have heard about this but quite recently Lady Gaga made splashes in the media by announcing that she has fibromyalgia …

Claire Flores
February 11, 2018

CSSA annual vacation fund raising is over

CSSA is a community that cares and one of the ways that we show our members that we care is by setting up annual vacations for our youngest members. Every year funds are raised with the intent on making the lives of some of our most vulnerable members somewhat easier. This year we’ve really went out of our way and decided to book a trip to Split, Croatia. A local travel agency we’ve worked with before suggested the location. We were kind of skeptical at first, but after finding many cool things that you can do in Split, we’ve decided to go with this destination.

One of the things that our members will surely love is the Split to Blue cave tour, which we’ve heard great things about. But I digress from the most important thing, community. A community that cares is what made all this possible, all of you kind people who have contributed have made it possible for our little ones to have the time of their lives, and that is something that I am very thankful. As is again tradition, once the vacation is over and the kids come back, we’ll organize a welcome back picnic for all the CSSA members to enjoy. This will bring to a close another year here at CSSA, which couldn’t be possibe without all of you. So thank you, and here’s to another good year.

Join the cause

The team behind CSSA would like to get in touch with others who might suffer from various chronic disorders, who have been shunned by institutions, in an effort to show them that they are not alone. CSSA members are spread out all across the country. We can provide you with support and help get in touch with the right doctors that will help you deal with your situation. We hold regular meetings in local hubs where we talk about the issues that trouble us and where we have fun. There’s a community room at our offices in Washington DC, where our members can talk, share their experiences, support each other and also have fun. We have board games, video games, and recently we even bought several cheap drones that we use to have some fun during meetups. I and all my colleagues like to think that the best way how to deal with chronic syndromes is by filling your time with hobbies, whatever they might be. That way you don’t spend time thinking about your illness and just relax.

History of CSSA

CSSA is a relatively young support group for chronic syndrome sufferers made up of people who have gotten together in order to provide each other help and advice on how to deal with their disorders. We have officially started our effort back in 2012. Out of the ashes of many similar non-profits that have existed before us, we got together and formed CSSA, Chronic Syndrome Sufferers Association. Majority of our membership know each other from many similar associations that have either existed and closed their doors, or exist for specific disorders that people battle against.

Speaking of disorders, you must be wondering just what kind of disorders it is that we’re talking about here. Well, we cover pretty much all of them. We have members that suffer from Multiple Chemical Sensitivity disorder, Chronic Fatigue Syndrome, Chronic Myofacial Pain disorder, Gulf War Syndrome, Post Polio Syndrome and other related illnesses. We are a diverse group with a large membership all across the US. You can join us to, and make your voice heard. Not only that, but like we have already mentioned, we offer a lot of different fun activities, like flying beginner drones, for our members during meetups.

Public perception of the chronic syndromes

We here at CSSA are well aware of the publics’ perception of chronic disorders and syndromes that are ailing our community. Even disorders like the Gulf War Syndrome, one that affects our veterans, gets flack and disbelief not just by people, but health care professionals as well. Not to mention some of the less known disorders that some of our membership is dealing with, like Multiple Chemical Sensitivity.

Members of CSSA are really saddened by the situation we have found ourselves in. It’s really disinheriting seeing our problems dismissed like they don’t exist, but they still do affect a lot of people. They are very real to us. It is our hope that through our work here with the Chronic Syndrome Sufferers Association, and also through the work of many other similar groups out there, we will fight for our right to be taken seriously.

Our mission

Mission of CSSA is first and foremost to help people who suffer from chronic syndromes get the right treatment so that their situation and quality of life is improved. Chronic syndromes take the toll on not just those who are affected by them, but also on their loved one, like any other condition. CSSA will strive to help people in three ways.

Knowledge

Many people are affected by chronic syndromes without even realizing this. They just shrug it off as either being tired, not drinking enough coffee, not getting enough exercise or in some other similar way. They usually employ half measures in an effort to deal with their problems. Key step in getting help is admitting that you have a problem. Luckily you’ve come to the right place. Our plan is to post articles here on the website that can help people learn more about the serious chronic syndromes that exist out there, and also how to come to terms with the fact that you might have them.

Acceptance

Once you finally admit to yourself that you have a chronic syndrome, the next step is to accept that you will need help and that you are going to need to deal with the stigma that having chronic syndrome entails. That’s what we’re here for, to help people like you. CSSA team is always ready to listen to people who found themselves affected by a disorder that they can’t quite understand or explain. Members of CSSA are always here for other fellow sufferers and we are always going to be here. Get in touch with confidence that here you’ll find acceptance, understanding and help.

Treatments

Those of you who have any kind of knowledge about chronic syndromes will probably be familiar with the fact that depending on what kind of condition it is that you have, there might not be that much that you can do, but that doesn’t mean that you should just give up and not try and look for treatments. Many methods exist out there which are devised in order to help people like us. We will use this website of ours from time to time to post articles explaining breakthroughs in chronic syndrome treatment. However the real strength of the CSSA is in it membership. We’ll be here for you no matter what.

 

Thank you for your support

The entire team here at CSSA would like to thank you being here for us and for allowing us to help you. We are pleased to hear from you, so get in touch using the contact page. Thank you once again, and see you at our meetings.

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Support the cause

None of this what we do here would be possible without our members who are basically what makes CSSA great. We wouldn’t exist without you and for that we are very thankful. We don’t ask for any help if you can’t afford it, but if you can and you want to send some spare change our way, you won’t hear us complain. Please get in touch with us for payment details, as we still haven’t worked out a way to handle direct payments automatically. Thank you.

Tweets of the day

Sufferers of a TREATABLE condition – PTHP – are commonly misdiagnosed with #ChronicFatigue Syndrome or #Fibromyalgia https://t.co/RWzwFut2FA Hundreds of thousands of people may be suffering needlessly. Simple diagnosis. #ChronicPain #CFS #cfsme #spoonie #ChronicIllness

— Richard Lowes (@Richard_Lowes) February 5, 2018

MEA Review: The SMILE trial – a lesson in how not to conduct clinical trials in people with ME/CFS @MEAssociation #MEcfs #ME #ChronicFatigueSyndrome #ChronicFatigue #MyalgicE #MyE #MyalgicEncephalomyelitishttps://t.co/NFMDw39mVx

— NowsAllThereIs (@AllThereIsNow) January 31, 2018

Exhaustion is the new black. Follow these simple tips to fight off #ChronicFatigue in your everyday routine: https://t.co/6texhRITMS

— UMiami Health System (@UMiamiHealth) January 23, 2018

State chapters

CSSA has chapter houses in almost every state all up and down the West coast and sporadically throughout the entire continental US. Get in touch with chapter house leaders to find out how you can join meetings and seek membership in the CSSA.

Patrick Simmons

Patrick is the chapter leader for the northwest United States. He currently resides in Oregon, but because of the nature of his work as a traveling salesmen, he spends more time on the road than at home. That makes him perfect for covering a lot of ground and helping cover a large swaths of land for the CSSA. You can get in touch with him by sending a message using the contact page.

Julia Ling

Julia runs our California chapter, but just like Patrick she basically covers the southwest US. California has the highest number of members, so Julia has her hands full with just the sunshine state alone. However she still manages to help out with Nevada and Arizona, where far fewer members exist. Still we are here for everyone and Julia is here for you if you are in the southwest US.

Justin Colbert

Justin works as a paramedic, and he has plenty of experience dealing with chronic pain syndromes. He lives in Nebraska and works in IT. Ever since he was little he was that kid who had asthma, bad posture, wore glasses, and as he was finishing high school he discovered that pain he normally felt isn’t something normal. That’s when he got interested in chronic pain syndrome. He is currently healthy and experiences minimum symptoms. Get in touch with him if you are in central US and you want to hear from him how he managed to overcome chronic pain syndrome. In his spare time Justin loves playing with tech, PCs, smartphones, gaming, video drones, the usual suspects. Justin loves life and he doesn’t think having chronic syndrome means the end.

Claire Flores

Hi there, my name is Claire Flores and I’m the head honcho on the website here and I’m also in charge of the east coast CSSA operations. Everything that you see posted on the website here goes through me. That means that should you come across something incorrect, it’s my fault, and you should yell at me. I also handle the day-to-day operations for the CSSA meetups all up and down the east coast. Get in touch with me if you want to join or come and visit one of our meetings.

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