The Fight is on...Imperial College XMRV Study

[valia]

HI, What is the problem with Charles Shepherd, just renewing my membership for the MEassociation, i don't want to be finacially helping the wrong people?

Hi Coxy, sorry I shouldn't make statements that I am unable to follow up, not through lack of evidence, there is plenty out there, simply because I don't have the brain power at this moment


I think the best person here to answer is Suzy from ME Agenda (sorry Suzy if I am passing the buck, it's just that I know you have personal experience with Charles Shepherd ,where I would be going on what I have read)


I have edited to add - I think you have to ask yourself what has this organization done to help ME patients in general?

Then, what have they done to help me personally, has my condition/acceptance of it or treatment improved? in the case of MEA, I could find nothing in fact they have probably caused us to take a step backwards

The MEA website has a list of geographical locations of the new NHS multidisciplinary hospital clinics that have been set up for diagnosis and management of ME/CFS.

This on their website directs you to local CBT/GET clinics they will not get one penny from me

 

[Dx Revision Watch]

...I think the best person here to answer is Suzy from ME Agenda...

The most extensive source of comment on UK patient organisations and their satellites can be found in the archives of the ONE CLICK Group.

 

[Martlet]

Hi Adam.

How did you get to see this doctor? I'm not too far away from sheffield, how did you get refered?

As an aside, all these Sheffield or near Sheffield folk! I'm also from near Sheffield, on the Derbyshire side of the Great Divide. Lived in Sheffield for two years while one of my aunts lived there all her married life. Nice to see so many "locals" here.

 

[Gerwyn]

Lying in bed clinging to it because it feels as if it is a raft in a storm or struggling to walk with the same feeling has been described in ME since before it was mixed up with CFS. I started to use a walking stick so I had a reference for" up".

Some of these problems are to do with proprioception, the sense we have of our position in space. This is a very under researched part of the nervous system, but I believe it can be a big part of the disability in ME.

I always touch things. If I have to venture out into open space I walk very slowly with my arms out like a trapeze artist. I hadn't realised how much I did it until I began having episodes of blindness and I was still able to get about in the house - a positive side to everything :Retro smile:

I have a positive Romberg sign now, I fall over when my eyes close and this makes it worse but I held on to things instinctively for years.

Mithriel

Same here i felt like a disembodied conciousness for about three years I,ve heard it described asa loss of a cognitive map.Of All my symptoms that is probabvly the most horrible.

 

[natasa778]

Lying in bed clinging to it because it feels as if it is a raft in a storm or struggling to walk with the same feeling has been described in ME since before it was mixed up with CFS. I started to use a walking stick so I had a reference for" up".

Some of these problems are to do with proprioception, the sense we have of our position in space. This is a very under researched part of the nervous system, but I believe it can be a big part of the disability in ME.

I always touch things. If I have to venture out into open space I walk very slowly with my arms out like a trapeze artist. I hadn't realised how much I did it until I began having episodes of blindness and I was still able to get about in the house - a positive side to everything

I have a positive Romberg sign now, I fall over when my eyes close and this makes it worse but I held on to things instinctively for years.

Mithriel
Same here i felt like a disembodied conciousness for about three years I,ve heard it described asa loss of a cognitive map.Of All my symptoms that is probabvly the most horrible.

sitting here thinking this is how kids with autism must be feeling, without being able to describe it... (proprioception huge issue in most)... one thing that helps many in this area is cranial osteopathy.
sorry off topic

 

[Adam]

Hi Knackered

Or should I say ay up?

I got admitted to E ward at Hallamshire 13 yrs ago, because GP was filling me full of antibiotics and I was getting no better. E ward is infectious diseases. They seem pretty open minded about ME/CFS being virally mediated illness. Not to say I haven't come across some prejudice. Don't know how you could get admitted there. Sorry.

take care Adam

 

[Adam]

Lol Martlet

Bet you'd rather be in St. Louis?

Saw your post on Guardian 'Yuppie Flu' article. Excellent. A bit of Sheffield Steel in there I reckon.

Most of my family history is Derbys. Farm hands and shoemakers, poor folk leaving the countryside for the big city in the mid 19th century. My Gt. granddad on my dad's side left Clowne, Derbys. in 1864 to join the police force in May of that year just a few weeks after the Sheffield Flood which killed over 240 people, after a dam burst.

all the best from sunny (freezin cold) Sheffield

 

[darkrobot]

Another Sheffielder here! Strange huh? I've never had any luck with the NHS so am now seeing a LLMD privately to treat various bacterial nasties.

 

[Quilp]

Oh another man of steel here....well not quite, I was a student there for two years. I remember the new bus station being built on Pond Street ( 1989/90 ) I lived in Totley for a while, very posh, and then i went to live in Pitsmoor !!! Oh dear you could have warned me !

Kind regards, Mark

 

[Martlet]

Lol Martlet

Bet you'd rather be in St. Louis?

No Adam. We are desperate to move back to that side of the Pond - but to Germany. That said, I love the Peaks. Whenever I come home, my heart beats faster the moment I see the hills in the distance. We were in Sheffield year before last. Before that, I hadn't been since 2000. Lots of changes. Love the market in the city centre!

Saw your post on Guardian 'Yuppie Flu' article. Excellent. A bit of Sheffield Steel in ther I reckon.

Cut my political teeth in Sheffield.

 

[Martlet]

Oh another man of steel here....well not quite, I was a student there for two years. I remember the new bus station being built on Pond Street ( 1989/90 ) I lived in Totley for a while, very posh, and then i went to live in Pitsmoor !!! Oh dear you could have warned me !

Kind regards, Mark

Heh Mark, I lived in Totley. Smallest house on Totley Brook Rd.

 

[Mark]

I remember my years in Sheffield as some of the best of my life. That was (just) before I got sick though.

According to my calculations, so far 0.5% of the forum members live or have lived in Sheffield! Any more for any more?

Makes me wonder about surveying this; very difficult to survey perhaps, I could list 5 cities I've lived in and many more I've been to of course, but if there were some question in a patients survey, something might just show up.

I do always wonder about clusters, given we don't know how transmission works at all and that there's this mystery over 'outbreak' and 'non-outbreak' cases. I don't know what epidemiological studies have been done, perhaps someone knows of something relevant? Perhaps we could ask the health dept for a distribution map? Similar question internationally. Looks a bit embarrassing, once you're faced with the situation of trying to assess a global retroviral pandemic infection, if there's no such information available regarding the affected patient population...

 

[Adam]

Hi Mark

Glad to hear you had some good times in Sheffield.

I think you are right about the survey. I imagine the statisticians will soon be number crunching. Prevalence will be top of the agenda now that there is the issue of a contaminated blood supply. I imagine though that the transmission risk will be low. I understand there have been a number of studies by the geneticists, which is wherethey will uncover one of the missing links to the puzzle i.e. why some people contract XMRV but don't go on to develop XAND.

Adam

Sheffield born and bred

 

[helsbells]

LOL Im from Sheffield too, we seem quite well represented..................

Helen

 

[valia]

LOL Im from Sheffield too, we seem quite well represented..................

Helen

How does an MEer get up and down all them hills?

 

[brenda]

I stayed in Sheffield for a few weeks once.