At last! A press article on ME/CFS that is accurate and informative

[Hip]

The Palo Alto newspaper coverage has in turn been covered in 'Scope', an online Stanford Medicine publication:

http://scopeblog.stanford.edu/2015/...diseases-we-know-nothing-about-a-look-at-cfs/

I really like the catchphrase title of that article:

“This is probably one of the last major diseases we know nothing about”.

We could use that phrase in advocacy campaigns: it nicely encapsulates the fact that ME/CFS is still a major area of scientific ignorance.

Science does not like to have major uncharted areas where it knows next to nothing about; so that phrase neatly plays on scientific instincts of curiosity and exploration.

 

[Little Bluestem]

It's very much a case of discrimination though, to demand that bed-bound or other severely disabled patients turn up in person.

In the U.S., doctors who make house calls a very expensive. I doubt that there are any in the rural area where I live.

My mother is housebound and sometimes bedbound (not ME/SEID). We can get nurses to come to the house. If she needs a doctor, we have to call an ambulance. That is very expensive, but medicare/insurance pays for it.

 

[Bob]

In the U.S., doctors who make house calls a very expensive. I doubt that there are any in the rural area where I live.

My mother is housebound and sometimes bedbound (not ME/SEID). We can get nurses to come to the house. If she needs a doctor, we have to call an ambulance. That is very expensive, but medicare/insurance pays for it.

My new doctor does telephone consultations, which is a first for me. It's very useful.

 

[Janet Dafoe]

In one of the articles his mother mentioned that the gastroenterologist refused to insert a feeding tube and instead suggested pysch counseling. Does anyone know if they were finally able to get someone else to insert the tube?

Whitney got his jtube (feeding tube into small intestine) on January 7, 2016. We are slowly increasing the nutrients we are able to put into it. We are now up to 1.5 cups of peptamen along with a special formula of metabolites created by Dr. Naviaux. His blood tests are starting to look a little better, but unfortunately, he is still in really bad shape and hasn't shown improvement in his ability to communicate and still crashes at the slightest thing. We just keep going, one day at a time. (from Janet Dafoe).

 

[Sasha]

Glad to hear that there's some improvement in Whitney's ability to take in nutrition, @Rose49. Whitney and you and Ron are often in my thoughts, and I'm sure those of everyone here.

 

[Scarecrow]

@Rose49 I'm tagging you so that you see @Sasha's message immediately above.

 

[Sasha]

@Rose49 I'm tagging you so that you see @Sasha's message immediately above.

Oops, left the "9" off! I've edited it.

Thanks!

 

[Janet Dafoe]

Just to clarify, this doesn't refer to Stanford University docs. It's the local medical services in Stanford. I've had similar problems where I live. The local doctors required me to turn up in person to present my photo ID, before I could register with them, but I couldn't leave my home. It felt like it was a way to filter out 'problem' patients. i.e. patients with complicated care needs. Luckily I found a helpful doctor who accommodated me. It's very much a case of discrimination though, to demand that bed-bound or other severely disabled patients turn up in person.

Yes it does refer to Stanford docs!

 

[Janet Dafoe]

I think I might have read somewhere that Whitney is now receiving nutrients via a feeding tube. But please don't rely on me, because my memory is notoriously bad, and i'd need to find the info again to be sure.

It was a top Stanford surgeon who didn't want to insert tube because "frankly, I think he needs intensive psychiatric intervention ". Andy Kogelnik found a wonderful surgeon at El Camuno Hospital, Dr Comlos, and he inserted j-g tube on Jan 7. Whitney is now getting almost all nutrition and fluids through j tube, and soon we will be able to stop TPM feeding through PICC line! Many blood tests much improved, but so far Whitney can't tell the difference and is still really miserable. We are laying the foundation for more progress...

 

[Bob]

Yes it does refer to Stanford docs!

Thanks for the clarification, Janet. I made a wrong assumption because I didn't think you could have come across that sort of ignorance from the professionals at Stanford uni. But I should have known better! Ignorance is blind to academic institution!

 

[Jill]

Crazy situation in NZ too. My partner is severe but still eating thankfully. Housebound /bedbound with bad r/h side abdo pain. Ended up recently in hospital ( but that killed him) and silly A&E dr dismissed it all as IBS. We were clear to say it was NEW nd DIFFERENT but still she knew best. She was english and was almost theatrical in manner - just like SW. His doctor had elicted severe guarding that afternoon,( blood tests showed elevted white cell count) and sent us there, and then she was too "god like"to even bother examining him.
I've got a complaint in with the district health board and hospital, which I'm fighting alone. They ph'd today to say "sorry they were delayed in getting back to me (theyv had 6 weeks) and I should be getting reports shortly". I suspect I'll get PACE thrown at me bigtime and that Al is putting it on. I also am ill with 4-5 level ME, so its a tough thing to fight with little brain power.
My letter of compliant I directed straight at the CEO and today the lady who phoned asked that I do everything thru her now. I guess shes the gatekeeper.
I guess I'm gtting around to asking, how on earth do you get people to believe you? I included the IOM report and the clinicians primer, and shepherd booklet - but I think I'm going to get blown off. Has anybody , anyone knows been thru this relatively recently. Short of boxing them over the ears with references I don't know what to do. I'll await their response first - but are there any lawyers on this site that may be able to help me? i also need to get office put on this horrid laptop ( I've been doing everything using my iph up until now and am a mac user whose been given a pc that updates by itself and I'm very unconfident with). Are there any free wordprocessing programs - or preferabbly word, free online anywhere. Sorry to highjack thread. Anyway, just my bleat for now .


PS. Another girl we know was admitted for tube feeding and they were reasonably good - put her in own room etc. But when they discharged her they said "we don't want to be doing this again!! Like she wants it???

 

[A.B.]

Are there any free wordprocessing programs - or preferabbly word, free online anywhere.

http://www.libreoffice.org/

 

[user9876]

I've got a complaint in with the district health board and hospital, which I'm fighting alone. They ph'd today to say "sorry they were delayed in getting back to me (theyv had 6 weeks) and I should be getting reports shortly". I suspect I'll get PACE thrown at me bigtime and that Al is putting it on. I also am ill with 4-5 level ME, so its a ?

If they throw PACE at you as well as pointing out the flaws it is worth saying that is was aimed at those with mild to moderate CFS who could make the appointments to the clinic. FINE was aimed at more severe patients and had a null result.

Also worth saying PACE had a null result in the long term follow up so it also doesn't work.

 

[Jill]

http://www.libreoffice.org/

Thank you very much

 

[Jill]

If they throw PACE at you as well as pointing out the flaws it is worth saying that is was aimed at those with mild to moderate CFS who could make the appointments to the clinic. FINE was aimed at more severe patients and had a null result.

Also worth saying PACE had a null result in the long term follow up so it also doesn't work.

Yes thanks, I've listened to tuller now. Just in meetings under stress I tend to snap. I had such a good spell over summer and felt more resilient to all that too - now back in the shite with sore throat, brain constipation and keeling over and dying with neck chopping pain. I'm usually so logical , but I'm spun around at the mo. Let's hope I can settle it somehow . Thanks again for your calm logic . Can I correspond with you privately if I need to about the details of the trial ? Thanks

 

[helen1]

@Jill
How about getting in touch with Dr Vallings to see if she can recommend a patient advocate for you? Who knows she herself might even help you out. PR member @M Paine wrote about her if I recall. Maybe he can chime in.

 

[M Paine]

Hi @Jill, sorry to hear of your plight. Ros Vallings does take referrals, you can read more here at her clinics website.

Again, truly sorry that you ran into one of the 'bad' ones, I admire your courage to do something about it, particularly when you yourself also suffer. I hope that next time, you encounter a more qualified doctor when you need it. I can recommend a good GP if you are in Auckland Central.

Google docs is also a good tool for word processing.

 

[Jill]

Hi @Jill, sorry to hear of your plight. Ros Vallings does take referrals, you can read more here at her clinics website.

Again, truly sorry that you ran into one of the 'bad' ones, I admire your courage to do something about it, particularly when you yourself also suffer. I hope that next time, you encounter a more qualified doctor when you need it. I can recommend a good GP if you are in Auckland Central.

Google docs is also a good tool for word processing.

Thank you . I am a patient of Ros's, but would like to know of another good GP as I can't see her practising for too much longer .
Hey, I got a reply ex counties manukau health board. They aren't offering much to al, except that he can infact be seen by their pain specialist ( something they'd denied previously), and he can be put into the gastro system. What they are doing to improve education however is kinda interesting . They have assigned someone to research it and present at a grand rounds and have asked if I'll go and talk about what it's like for family member. They don't know I have it as didn't tell them . I'll go along but likely will show film or utube clips. I'm pretty crook
And it'll kill me. I kinda want to show them the light study as I think the biggest prob is the exercise prescription and people not being believed . Your thoughts ???
@M Paine

 

[M Paine]

Sure thing. I see Julie Hancock at CityMed on Albert Street in the CBD. She is not a CFS expert on the same level as Ros, but she's understanding and makes a genuine effort. Ros actually mentioned that she thought Julie was a very good Doctor, so they must know eachother. The reason I think she makes a good Doc is that she is fairly empathetic, and willing to take suggestions and allow a bit of self guided treatment. Most of the prescriptions I get from her have been things I have asked for. I guess that's not everyone's preference, but it works well for me. She does seem to have a fair amount of CFS patients it seems.

It sounds like the Counties Manukau District Health Board are acknowledging the issue, I think that's a good response. I agree that patients not being believed is probably near the top of the issues list, I don't know about the excercise thing and how prevalent that is in NZ, but sounds like a good idea too. Even just getting the message across that the wrong kinds of excercise is detrimental to patients. I know I would have liked to receive that message sooner than I did.

What is the light study you mentioned?

Cheers -M

 

[daisybell]

@Jill that sounds good that they want your input for a grand round. Does Ros know this? If there's enough time, and you would like it, maybe those of us in NZ could work together on a presentation...? I'm thinking it would be really good to focus on the IOM report, and a few of the really pithy quotes from that, plus some from the academics debunking CBT and GET.....with your story about the reality of experiencing the medical system here.
I used to live in the Counties catchment, and had no luck with the DHB in terms of understanding or support for symptoms.