Annoying interview with a doctor about ME on STV

Dolphin

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I happened to come across this link http://living.stv.tv/health-fitness...-stigma-of-the-debilitating-condition/#tctext - this is a Scottish TV station (Scotland is part of the UK).

Although Dr Debbie Wake was probably trying to be sympathetic, it annoyed me. People can post comments under the video. She says near the end: "what we need to concentrate on is getting back to a normal life" or something like that. CBT is listed alongside phobias, depression, etc which is correct but gives an idea where she sees the cause of the illness. She says pacing is about gradually doing more each week. GET and CBT are also mentioned as treatments. She casts doubt on it following a virus and mentions a psychosomatic theory.

All in all, I wouldn't like to see this repeated and think people posting some comments might wake her and/or the team up. Perhaps they might even look to have a patient or carer on?
 

joyscobby

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Out of date re Scotland

I am very angry and anwered

Another ill imformed and outdated opinion. SCOTTISH GOOD PRACTICE STATEMENT ON ME-CFS was not mentioned launched in the Scottish Parliment in May nor the consultation document link below.

http://www.healthscotland.com/...0Final.pdf Also found @ http://mecfsinscotland.blogspot.com/

This clearly state the Difference between ME and CFS. ME is a Neuroimmune disease the can be clearly diagnosed using the Canadian Consensus that these documents recomend and otlines. In the UK CFS has been used to muddy the diagnosis and this is an attempt to adress this.

In addition there was no mention of ME being associated with the recently discovered retrovirus XMRV. Information on this can be found @ http://www.wpinstitute.org/...index.html

XMRV is present here in the UK despite what the much publised poorly conducted study said. It is most definetly here in Scotland. It has been tested for and is here. A large amount of research is underway to replicate and validate this.

Will this Doctor then come back on TV and admit her ignorance and apologies to the patients that are further harmed by the so called caring profession like her.

Please add comments to this on line)
 

Dolphin

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Great.
Although I'd like to get to double figures (say) in comments to really make an impression. There are just us three - hint to anybody else reading this! :Retro smile:
 
D

DysautonomiaXMRV

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RE: The videol So much ignorance from yet another 'A' grade schoolgirl who went to University to study Medicine and gain the title 'Doctor'.

1) She states ME is 'all part of the same spectrum'. FALSE.

ME is a SINGLE disorder and is not an umbrella or spectrum disorder.
CFS/ME (a British self made title) is an umbrella disorder that includes the neurological disease of ME and CFS. This however has no classification in any medical coding, it is a 'brand' sold by the UK Department of Health
and is no more accurate as saying Cough/COPD.

Very importantly, the disease ME involves inflammation of the brain or spinal cord. In the rare cases that autopsies are allowed on British ME patients, there has been evidence
of this shown. Also very importantly the British Department of Health state that ME describes brain/spinal cord inflammation are do NOT refute this.
ME by classification, and by acceptance by the British Department of Health of what ME means - cannot be a psychological disease whatsoever.

ME (Myalgic Encephalomyelitis) is a neurological disease. Very importantly ME (Myalgic Encephalopathy) is not classifed as disease and can include clinical depression. It is favoured by Pro Psychiatric ME charities in the UK.

2) She states ME is 'very hard to diagnose' and then goes on to describe Fukuda Criteria CFS!
ME is not very hard to diagnose, if you know what ME is, and can look for signs and symptoms of the disease.
ME does not need 4 symptoms to diagnose. ME requires evidence of neurological/cardiovascular/nervous system damage.
Canadian Criteria CFS does, yet she failed to mention this.

3) She states 'Graded Exercise' and 'CBT' and 'Pacing' are treatments for ME. FALSE.

These treatments are for people with CFS. All the research (the little research that is done that supports CBT/GE/Pacing)
is explicitly on people with Oxford Criteria CFS, or Fukuda Criteria CFS, which is not ME (Myalgic Encephalomyelitis).

Secondly the severely affected (ME is a disease that is severe) are excluded from ALL research studies that show
the 'effectiveness' of CBT/GE.

4) She states that people think ME can be caused by psychological factors. Interesting thought when ME is classified
as a neurological disease (ICD-10 G93.3) by the World Health Organisation since 1969.

5) She states that a virus is not causative of ME. A strange comment when Post Viral Fatigue Syndrome and ME are coded
in the SAME category - directly linking ME to a viral onset.

6) She states the NICE Guidelines on ME are a tool to help patients.

Firstly they are on CFS/ME an umbrella term of fatigue disoders and not ME.
Secondly all severe patients were excluded from any 'evidence' base - thus voiding the accuracy and relevance of the guidelines towards people with ME (Myalgic Encephalomyelitis).

Lastly it should be noted that outside the UK, CFS is not and never has been classified as a metal illness.
CFS has been hijacked by the British Psychiatric Profession who (terribly) now advise the American CDC.
CFS has so many 'criteria' that many are too broad and 'let in' mentally ill people. Specifically the British OXFORD '91 Criteria.

CFS is not coded as a mental illness, and one cannot meet the criteria for somatization disorder AND CFS simutaneously.
Despite this, the myth that CFS is a mental disorder is perpetuated and claims are made CFS is a form of 'illness belief' and a 'functional somatic syndrome'.

Lastly, patients with CFS label (that includes ME) have been found to test positive for XMRV in multiple countries around the world, pointing the finger firmly on a retroviral origin and far away from a 'debate' or 'disagreement' over psychological vs physical.

At the end of the day (ME) Myalgic Encephalomyelitis never was, and never has been a psychological disease at all. If this doctor is going to use the term 'ME' and not 'CFS/ME' then it
would be wise for her to learn the difference between the two.

NB: Permission to re-post anywhere given.
 

Dolphin

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Well done on this.

I was just going to post it on the ME Association Facebook page, where I highlighted the video when I saw this:

Very importantly, the disease ME involves inflammation of the brain or spinal cord. In the rare cases that autopsies are allowed on British ME patients, there has been evidence
of this shown. Also very importantly the British Department of Health state that ME describes brain/spinal cord inflammation are do NOT refute this.
ME by classification, and by acceptance by the British Department of Health of what ME means - cannot be a psychological disease whatsoever.

ME (Myalgic Encephalomyelitis) is a neurological disease. Very importantly ME (Myalgic Encephalopathy) is not classifed as disease and can include clinical depression. It is favoured by Pro Psychiatric ME charities in the UK.
I don't believe the ME Association is a pro-psychiatric ME charity so I'm afraid I won't be able to post it.

Anyway hope you post it as a comment. It's still only three comments to me (although it took a while for the first two to show up to me earlier).

Also you have a typo: "metal illness" (I wouldn't normally point out typos but it's in the underlined bit).
 

bullybeef

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It just sounds like she took her notes from the NICE guidelines. There's a good little doctor. She must be after a promotion.

If someone could add the following links in comments for me:

GET does not help people with ME: http://www.cfids.org/cfidslink/2009/080503.asp

ME is a disease of the nervous system, as is MS and Epilepsy: http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933 and http://www.meactionuk.org.uk/ScotME_04_WHO_decides.htm

ME and CFS are two separate entities, CFS being coined in the last 30 years: http://www.hfme.org/

ME is fatal: http://www.ncf-net.org/memorial.htm

Please could someone also had this to the comments if possible:

If you cannot fully explain something or you have no knowledge of the subject you are discussing, please DONT discuss it. Please leave it to the experts and stop falsifying a crippling, long term disease with NO cure and NO recognised treatment. You are causing more harm than you are preventing.
 

joyscobby

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zero tollerance come on People

Come on people Zero Tollerance to this attitude

Scotland, and me particularly need your help.

Scotland is a small country with a population of about 6 million. The 5 borough of New York City have more. It is part of the UK but has it's own government (kinda federal) Health is a part of that not the UK government in London. I feel very much like a lone voice here. I was the first to come out and say I was the 1st XMRV +ve in the UK but I am also the only XMRV +ve in Scotland (at the moment)

Please let your voices be heard

Joy
 

Dolphin

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It just sounds like she took her notes from the NICE guidelines. There's a good little doctor. She must be after a promotion.

If someone could add the following links in comments for me:

GET does not help people with ME: http://www.cfids.org/cfidslink/2009/080503.asp

ME is a disease of the nervous system, as is MS and Epilepsy: http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933 and http://www.meactionuk.org.uk/ScotME_04_WHO_decides.htm

ME and CFS are two separate entities, CFS being coined in the last 30 years: http://www.hfme.org/

ME is fatal: http://www.ncf-net.org/memorial.htm

Please could someone also had this to the comments if possible:
It's probably better if people with different usernames send in comments i.e. rather than we just then post in more than one comment (except in the case of a long comment which was broken up).
 

valia

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OK, Tomk, as a fellow scot I felt duty bound to post on STV, however it won't accept my post I know it is not very good but I am being accused of swearing?

Message received: The term "e " is not allowed, please replace this with a more appropriate word

One of my symptoms is that I don't seem to be able to do anything without error (it is written on my symptom log and I cheque it everyday to say this is still ongoing)


But try as I might I can't understand how "e" is offensive particularly when in no part of my post have I written "e".

I should just give up but being dyslexic and having spent 1 hour writing this post I am pretty peeved






It's OK I found what the problem was it wouldn't accept M.E romoving the point fixed it.
 

Dolphin

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OK, Tomk, as a fellow scot I felt duty bound to post on STV, however it won't accept my post I know it is not very good but I am being accused of swearing?

Message received: The term "e " is not allowed, please replace this with a more appropriate word

One of my symptoms is that I don't seem to be able to do anything without error (it is written on my symptom log and I cheque it everyday to say this is still ongoing)


But try as I might I can't understand how "e" is offensive particularly when in no part of my post have I written "e".

I should just give up but being dyslexic and having spent 1 hour writing this post I am pretty peeved
Hi Valia,

Sorry to hear that.

Did you save it? If you post it here, we might be able to see if there is another way of saying it e.g. e-mail could become email or whatever.
 
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Hi TomK:

RE: Your annoying Interview post.....I actually "Laughed Out Loud" when I read your words! Our MD told us NUMEROUS times the EXACT verbiage....."get on with your life" theme. So my son Blake took him literally. He went off to college, lived in the dorms, then we hauled him back on the last day of College completely PRONE, smelling so bad of a fungal infection and vomit and dehydration...the MD was horrified. I said "Is this what you meant by going out and getting on with ones life?" Blake gave it his all for one year, he did what his MD told him and just "moved on with his life." The MD sees CFS/CFIDS Illness differently NOW after witnessing his life long patient almost die of this disease. We now get some respect and are treated with care and compassion. Unfortuneately, it took great lengths and a near fatality to get it. It seems the outside world just is "not getting it" at times.
Blessings,
Julia
 

Dolphin

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Hi TomK:

RE: Your annoying Interview post.....I actually "Laughed Out Loud" when I read your words! Our MD told us NUMEROUS times the EXACT verbiage....."get on with your life" theme. So my son Blake took him literally. He went off to college, lived in the dorms, then we hauled him back on the last day of College completely PRONE, smelling so bad of a fungal infection and vomit and dehydration...the MD was horrified. I said "Is this what you meant by going out and getting on with ones life?" Blake gave it his all for one year, he did what his MD told him and just "moved on with his life." The MD sees CFS/CFIDS Illness differently NOW after witnessing his life long patient almost die of this disease. We now get some respect and are treated with care and compassion. Unfortuneately, it took great lengths and a near fatality to get it. It seems the outside world just is "not getting it" at times.
Blessings,
Julia
Sorry to hear this. I was only mildly affected when I was 16/17/18/19/20 but by 22 I was flat on my back and have been severely affected the last 15 years (I wasn't diagnosed the first few years). Doctors are generally not warning people that if they're not careful, they can get worse.

But over the years, I've become philosophical. I don't blame the individuals doctors (like family physicians etc) so much as they usually don't have time to learn as they have to know about so many conditions. I blame the "experts" like Peter White who goes around saying exercise is "safe and effective". Similarly while I dislike what this woman said, I reckon she is probably misled.

It'd be great, by the way, if more people put comments on the site. Up to 7 people now.