My Dream

[Nielk]

My dream

My ultimate dream is to have a specialized inpatient clinic for people suffering from CFS.

One would be able to check in to this "safe" mold free, allergen free environment.

All my needs would be taken care of as far as keeping the room dark, quiet, cleaned and the linen changed every day.
Healthy organic (kosher in my case) meals would be served three times a day.

All the possible tests out there would be taken right at the clinic. All the blood work, Methylation panel (which is illegal to even order if
you are a New York resident), Yasko panel, all vitamins and amino acids tested. A safe tilt table test. a brain spect scan & or EEG test.
Test of all hormones, neurotransmitters(is there such a test) and many more which I can't think of right now.

They would have specialists read the results and based on these results supply me with needed supplements, medicines.
They would have detox specialists who would help me to safely detox from the poisons in my body (including Benzos).

Of course they would have an infrared sauna for patients to use as well as massage specialists, acupuncturists, nutritionists
and Chinese medicine Herbalists.

They would also have a recreational room where if you are feeling better you can meet with other PWCs.
They would have set times for support groups if one feels like joining.

I just can't handle it on my own anymore!

That's it for now.
Anyone want to join my dream or add to it?

ps. I realize that this clinic would have to be like in Panama City or another place like it, to make it even remotely affordable.

 

[hurtingallthetimet]

your dream sounds wonderful...shows what a kind a caring person you seem to be...it would be great if such a place exsisted that was also affordable...i have alot of anxiety, nervous problems and psych doctor had mentioned me going into an inpatient clinic to help, but i couldnt afford any...but i think it would have helped me alot...

ive seen on other support group im on and maybe this one i cant remember others mention cfs centers but said they are very expensive..

would be great to if more doctors and people were more knowledgeable about these illness....it seems like these illness get very little understanding or sympathy...we all have such serious effects in our lives from being so ill but its like no one cares

 

[Undisclosed]

I love your dream, wouldn't that all be so perfect if we had a set up like that. I think I would add something. I used to be a community nurse who visited very ill peoples in their homes. Wouldn't it be nice if nursing services could offer home visits that provide really good services for people with ME who want to stay in their homes -- take the care to them, help them make their homes ME friendly, coordinate medical and other services (carers, meals-on-wheels). We can only dream though.

If I felt better, had lots of money, that's what I would do. The state of home care these days in Canada is abysmal, basically if there is another abled body person in the home (who cares if they work full-time, or if they are 85 year old spouse with medical issues themselves), you don't get any services or you have to pay for them privately.

I was dreaming the other day because there was a huge lottery with a prize of 300 million dollars of something like that and I was thinking about all the things I would do if I won that money. Oh to dream, then reality comes up and hits you in the face.

I would also like to see more appropriate education for nursing and medical students. When I was at Uni, they didn't even mention ME or fibromyalgia once. I learned about it later when I had a patient with ME/FM and Sjorgen's -- I am glad I helped this person by convincing her doctor that she was too ill to look after her husband who had congestive heart failure. I managed to get them a carer to do the cooking, cleaning and a nurse to look after treatments and I could never understand why on earth we had no education about ME in nursing school. That was back in 1991, have things changed, it doesn't seem so. I had this person as a patient in 2001, little did I know I would end up in the same boat.

I love your ideas, we need to find a really rich person to put your ideas into action. Isn't it sad, it will probably remain a dream.

Kina.

 

[biophile]

I have a recurring fantasy/dream too. One where ME/CFS is given the deserved funding it has missed out on for 25 years despite being as common and disabling as other major diseases. The progress is painfully slow largely because of poor funding, if it was adequately funded then decades of progress at the current rate could be made within a few years. Let's start with a "conservative" 100 million dollars per year, although in my daydreams it starts out with a one billion dollar lump sum to make up for the past.

If the money came from the US government, we would probably have to play ball with the NIH and CDC but we would have to somehow "keep the bastards honest" (to borrow an Australian phrase regarding politicians etc). A joint effort from multiple governments would be more complicated. I imagine the allocation of major funding would help to unite the ME/CFS community but people would be falling over themselves to gain control over it or get a piece of the pie. If the money was from private sources, I guess private interests would direct how the money was spent. If the money came with no strings attached, I can only say what I would do with it.

Establish a ME/CFS science advisory group to pool research resources, allocate funding, share data, combat spin, etc.

World-wide awareness campaign and efforts to collaborate with local authorities to improve medical care.

A series of high-quality systematic reviews on the research literature to date, covering all aspects of ME/CFS, then use these as a guide for large scale studies.

Conduct fast-tracked trials for any treatment which has shown empirical or theoretical or anecdotal promise but remains under-researched.

Reinstate the equivalent of a journal for publications specific to ME/CFS.

A publicly accessible forum and wiki where professionals and patients alike can debate relevant issues openly for the purposes of moving the field forward.

Independent investigations into shenanigans involving how government authorities and companies and researchers with conflicts of interest have handled ME/CFS.

Set up a legal team and lobby group to protect the rights and interests of the ME/CFS community and take action against past and current injustices.

The "prominent" (relatively big fish in a tiny shallow pond) CFS biopsychosocialists and CBT/GET proponents have incited a lot of grief in sections of the ME/CFS community. I know some patients and advocates would want to see them completely cut off from any funding or prestige that would come with being involved with such a large scale project, or even ran out of town and pursued with legal proceedings. How should all that be handled when the aim is accurate knowledge and effective treatments over ideological spin and empire building?

If there is any truth to their approach, it needs to be understood in context for what it is and incorporated into the knowledge base with appropriate recognition of their contributions. However, if they are full of hot air which is stagnating progress and hurting patients, they need to be rebutted and shut down with irrefutable data so their ideas don't continue to poison the field.

So I would be reluctant to hand over money to them. In general I do think some funding should go to unbiased psychosocial research so we can finally get the truth out of well-defined cohorts. Assuming the people in question are needed at all, perhaps they can be brought in as consultants while other researchers finalize the methodology and conduct the research. It wouldn't be unethical to conduct "passive" epidemiological research, but I'm not sure about conducting "active" intervention studies involving CBT/GET even at the hands of other more trusted researchers.

 

[*GG*]

All the possible tests out there would be taken right at the clinic. All the blood work, Methylation panel (which is illegal to even order if
you are a New York resident), Yasko panel, all vitamins and amino acids tested. A safe tilt table test. a brain spect scan & or EEG test.
Test of all hormones, neurotransmitters(is there such a test) and many more which I can't think of right now.

Methylation panel is illegal to order in NY? Why would that be? AMA?

Sorry you are having trouble coping. Are you sensitive to meds?

GG

PS Thanks for sharing, when I first saw the headline, I was thinking you had a premonition or something like that! this more down to earth.

 

[Nielk]

Methylation panel is illegal to order in NY? Why would that be? AMA?

Sorry you are having trouble coping. Are you sensitive to meds?

GG

PS Thanks for sharing, when I first saw the headline, I was thinking you had a premonition or something like that! this more down to earth.

It's a stupid State law that they don't allow certain labs to be used unless certified by the great NY state. Both Health Diagnostics and Amy Yasko's websites clearly state that they will not accept samples from NY residents.

 

[Googsta]

Hey Nielk,
it is a lovely dream .

This is my favorite :
"At that time the eyes of the blind ones will be opened, and the very ears of the deaf ones will be unstopped. At that time the lame one will climb up just as a stag does, and the tongue of the speechless one will cry out in gladness." Isaiah 35:5,6

But in the meantime a lovely hossie for all of us would be awesome!

How are you doing with the Benzo? Please know your story helped me & many others. ((HUGS))

 

[Nielk]

Thanks for telling me that, Googsta. It makes my torture a bit more tolerable. I haven't advanced at all yet with my Klonopin problem. I only added another problem to my menu. (not willingly)

 

[Googsta]

Hang in there Neilk.

My hubby doesn't have M.E but spinal damage, he's been on Tramadol SR for several years & is tapering off. This is his second time doing so & I think it's been even worse. It's been hell here the past few nights, but he managed to actually sleep last night. He's trying low-dose Endep for the nerve pain now.

I watched an online M.E/CFS conference from 2010 by a doctor who I have always liked but he was pretty keen on Tramadol & said it wasn't an opioid (it's the closest thing to one for sure!).

Thanks to you I am finding safer solutions to my symptoms, I used to just pick up a prescription straight after the doctors. Now I come home & check it out on Drugs.com or Crazymeds. It's a shame more doctors haven't been on them personally before dispensing them.
And yet, I have always used Panadeine Forte (I know it ain't great for M.E) usually only 1/2 -1 tab a day if that & my doctor treats me like an addict. But they offer me some of these highly addictive/dependancy drugs all the time.
It pays to double check!
Take Care Love, X0 sorry for going off topic too ;p

 

[2bye]

It would be good to have inpatient and home care for PWME. Also we could have affordable housing in a setting with a clubhouse like a condo complex and an on call doctor 24/7. Everything tailored to meet the needs of PWME.

Or someone could find a cure and we can have our regular lives back.

 

[m1she11e]

Let me know if this dream ever comes to be because I would really like to go there about now!! I like 2byes comment... "Or someone could find a cure and we can have our regular lives back" the best though!!