From Our Readers: Comments and Suggestions – 8/13/14

Re: 10 Celebrities with ME/CFS

I found this article extremely annoying 

1.Several of these people claim that they had CFS/ME and recovered. Recovery after having this disease for more than 5 years is so very unusual that it raises doubts that what they had was indeed CFS/ME. Even if they did, their stories raise false hopes in the majority of people who have CFS/ME and false expectations in the rest of the population. 

2.All of these people were successful enough to afford treatments that are not available to the rest of us. Michelle Akers, for whom I have the greatest respect, managed to keep on playing soccer because she could get intravenous fluids in the clubhouse during breaks in the action. The only way I can get even a saline drip is by waiting until I am in such bad shape that someone has to drive me to an emergency room. I can’t afford experimental drugs and consider myself lucky to be able to afford essential pharmaceutical and natural remedies – many others with this disease cannot. Celebrities can afford to hire people to handle cleaning their house, keeping them fed nutritiously, paying their bills, etc. These mundane but necessary tasks take a huge toll on the energy of normal people with CFS/ME who cannot afford that level of care. 

3.Celebrities walk into a doctor’s office and get attention paid to them. Normal people walk into a doctor’s office complaining of fatigue and get told that reduced energy is a normal effect of aging, or are advised to get some outside interests to take our mind off our self-preoccupation, etc. None of them had to wait 10 or more years before getting a correct diagnosis as so many of the rest of us do.
4. Some of these people are not very well known, but some are. They have been blessed enough to have rewarding careers that they can pursue from bed or have recovered sufficiently to have a halfway normal life or at least have had a very rewarding life before getting sick. WHY THE HELL DO WE NOT HEAR MORE FROM THEM AS ADVOCATES FOR RESEARCH AND EDUCATION FOR CFS/ME SO MORE OF US MIGHT RECOVER SOMEWHAT TOO? 
These days, if one thinks of Parkinson’s Disease, Michael J. Fox comes to mind immediately. Why is that not true of CFS/ME and someone like CHER, for example? ~ Posted by: spiketheartist, Jul 21, 2014
I so agree. It’s hard enough to get seen but then EVEN with the docs that know ME/CFS is REAL you can’t get an appointment. I saw Klimas in June. I was told they would call me for a follow up appointment to discuss bloodwork. No calls for 6 weeks so I called her office. The first they can talk to me is October—- for JUNE bloodwork!! No celebrity gets treated like that. AND this is for a doctor known for her work in this illness! It’s not realistic to think any of us “regular” people will be attended to and treated well. And seriously, how do we know these people did not just have adrenal exhaustion or something such as that? I have been ill 19 years and I don’t think it’s going to “go away” and I will become well again. Not that I am negative but I am realistic. ~ Posted by: karenkb, Aug 2, 2014

Not to forget (former) German soccer-star Olaf Bodden.  Not an American, but a great ME/CFS-“ambassador” in Europe, too! Video here.

~Posted by: DJ_Mike, Jul 16, 2014

An Author Escapes From Chronic Fatigue Syndrome

Rev. Bernard Hillenbrand (Laura’s father) testified after me in Washington, DC. He starts @ Minute 5.

~Posted by: cfsboston

Re: Severe ME/CFS – New Clinical Study

Great Initiative, But Picture Will Still Be Incomplete 

the sickest cannot tolerate being studied, let alone have people in the room with them, so this population will still leave us with a question mark. i’ve been like this — paralyzed, mute, unable to open eyes. i couldn’t tolerate a new blanket for what i think was my birthday because the stripes sent me into further relapse. how do you study these PwME?

Re: The Neurobiology of ME/CFS

On the Right Track

This article is so head on. I’m order to start healing your body you must look at what caused this breakdown on the first place. To much dopamine? To much cortisol or ceratonin?  These articles help so much. Thank you ~ Posted by: Jeanalynn, Aug 5, 2014

It is refreshing that an integrative approach is suggested for this illness. In the medical world it seems like it is treated as a ‘hot potato’ that no one wants to take hold on. I have had this disorder for 5 years. Once given the diagnosis, basically one is left to try and manage on ones own. I volunteered for a study that is investigating the theory of ‘leaky gut syndrome’ with ME/CFS. I did so because my mother had multiple sclerosis, a disorder that has I have noted been seen amongst relatives of ME/CFS sufferers, and is also possibly linked with leaky gut syndrome. Surprise, surprise not even an acknowledgement from the consultant in charge of the study. The question is who will be able to pull this integrative approach together when there is so much apathy and dismissive practice within the medical profession? ~ Posted by: Sallyt, Aug 5, 2014

Re: P2P: The Question They Will Not Ask
Get rid of “CFS” 

This dichotomization of ME/CFS is nonsense! Just eliminate the idea of CFS. Sufferers are universally insulted by it. Doctors are confused by it. Non-sufferers are totally bewildered. ME may or may not be the most accurate name and it may or may not be a cluster of separate illnesses. But it will do – its just a name1!!! Right now we need more FUNDAMENTAL research to identify biochemical parameters.

Research|Research|Research. The reason people get hung up on this naming business is because of lack of research. ~Posted by: IanH, Aug 1, 2014

Re: Simmaron Foundation’s Immunology Workshop: The Forefront of Diagnosing and Treating ME/CFS

These tests won’t be any good moving forward

Histamine Intolerance has a blood test available in Private labs. A food intolerance of high histamines in people with a low enzyme DAO 🙂 Some may even have systemic mastocytosis/Mast Cell Leukemia which is very rare. Time to get busy Doctors ’cause a lot of you do not know anything about histamine intolerance to foods consumption a treatable condition with foods low in histamines and anti histamine meds including natural ones such as ‘histamine blocker’ sold on Amazon plus their is little published work but some great diet books on this disorder ‘undignosed’, now let’s all pull up our socks and start looking for this in severely ill patients who continue to die daily…blesses to all of you Sincerely Aidan G Walsh 🙂 also read her hell of getting a proper diagnosis there are 2 stories on this torture she went through like everyone else is going through…Be well everyone…let’s rule this out please!! Ihad a normal serum tryptase 4.3 but the test for HIT is around £42.00 here in London U.K. measuring enzyme DAO I have yet to have this done but will post results here as soon as I can… 🙂 thanks 🙂 God bless all of you and may he comfort all the sick always. ~ Posted by: AIDANGWALSH, Jul 23, 2014

Re: Norwegian ‘Woulds’ (and ‘Wouldn’ts’): The ME/CFS Survey

Rest is the Best

I have found, after 30yrs, that to listen to my body is the best policy. When I can’t stay awake and my body feels heavy with pain I simply sleep until my body wakes up and feels like being up. I am weak and fatigued but the pain is lessened. If I pace myself carefully, knowing when I need to rest or retreat, my body does much better, but it’s a fine line of balance that is hard to keep at all times. ~ Posted by: TeresaTK, Aug 7, 2014

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