Saturday, August 7, 2010

Two excellent blogposts

 
 
 
 

Medical similarities between MS and M.E. Permission to re-post

 
Medical similarities between MS and M.E. Permission to re-post by the author, Jodi Bassett
Medical similarities between MS and M.E.
The reason I'm envious is not so much because of the type of illness MS is medically compared to M.E. M.E. and MS are actually very similar medically in many ways, as the following list demonstrates.

Table 1. Medical similarities between MS and M.E.*

MS is primarily a neurological disease, i.e. a disease of the central nervous system (CNS).

M.E. is primarily a neurological disease, i.e. a disease of the central nervous system (CNS).

Demyelination (damage to the myelin Myelin and nerve structure sheath surrounding nerves) has been documented in MS.

Demyelination (damage to the myelin Myelin and nerve structure sheath surrounding nerves)has been documented in M.E.

Evidence of oligoclonal bands in the cerebrospinal fluid has been documented in MS.

Evidence of oligoclonal bands in the cerebrospinal fluid has been documented in M.E.

No single definitive laboratory test is yet available for MS but a series of tests are available which can objectively confirm the diagnosis with some certainty. No single definitive laboratory test is yet available for M.E.but a series of tests are available which can objectively confirm the diagnosis with a high degree of certainty.

MS can be severely disabling and cause significant numbers of patients to be bedbound or wheelchair-reliant.

M.E. can be severely disabling and cause significant numbers of patients to be bedbound, wheelchair-reliant or housebound.

MS can be fatal (either from the disease itself or from complications arising from the disease)

M.E. can be fatal (either from the disease itself or from complications arising from the disease)
 
MS significantly reduces life expectancy.

M.E. significantly reduces life expectancy. (M.E. reduces life expectancy by a greater period than MS: see Table 3.)

Symptoms/problems which occur in MS include:
impaired vision, nystagmus, afferent pupillary defect, loss of balance and muscle coordination, cog wheel movement of the legs, slurred speech
Hearing or speech impairment - resources
Speech disorders, difficulty speaking (scanning speech
Hearing or speech impairment - resources
Speech disorders and slow hesitant speech
Hearing or speech impairment - resources
Speech disorders),
difficulty writing,
difficulty swallowing
Swallowing difficulty
Painful swallowing, proprioceptive dysfunction, abnormal sensations (numbness, pins and needles), shortness of breath, headaches, itching, rashes, hair loss,seizures, tremors, muscular twitching or fasciculation, abnormal gait,stiffness, subnormal temperature, sensitivities to common chemicals,sleeping disorders, facial pallor, bladder and bowel problems, difficulty walking, pain, tachycardia, stroke-like episodes, food intolerances and alcohol intolerance, and partial or complete paralysis.

Symptoms/problems which occur in M.E. include:
impaired vision,nystagmus, afferent pupillary defect, loss of balance and muscle coordination, cogwheel movement of the legs, slurred speech, difficulty speaking (scanning speech and slow hesitant speech), difficulty writing, difficulty swallowing, proprioceptive dysfunction, abnormal sensations(numbness, pins and needles), shortness of breath, headaches, itching, rashes, hair loss, seizures, tremors, muscular twitching or fasciculation,abnormal gait, stiffness, subnormal temperature, sensitivities to common chemicals, sleeping disorders, facial pallor, bladder and bowel problems,difficulty walking, pain, tachycardia, stroke-like episodes, food intolerances and alcohol intolerance, and partial or complete paralysis.


MS can cause orthostatic intolerance (dizziness or faintness on standing).
 
M.E. commonly causes severe orthostatic intolerance (which often worsens to become severe POTS and/or NMH).
 
Short-term memory loss, word finding difficulty, difficulty with concentration and reasoning and other forms of cognitive impairment occur in 50% of MS patients. 10% of MS patients have cognitive impairments severe enough to significantly affect daily life.
 
Short-term memory loss, word finding difficulty, difficulty with concentration and reasoning and other forms of cognitive impairment occur in 100% of M.E. patients. Almost all M.E. patients have cognitive impairments severe enough to significantly affect daily life.
 
MS patients often become severely more ill in even mildly warm weather. Cold weather can also cause significant problems.

M.E. patients often become severely more ill in even mildly warm weather. Cold weather can also cause significant problems.
 
MS can affect autonomic nervous system function (including involuntary functions such as digestion and heart rhythms).
 
M.E. can affect autonomic nervous system function (including involuntary functions such as digestion and heart rhythms).

MS is thought to cause a breakdown of the blood brain barrier.
 
M.E. is thought to cause a breakdown of the blood brain barrier.
 
A positive Babinski's reflex is consistent with several neurological conditions, including MS. (Babinski's reflex or extensor plantar reflex is atest for dysfunction of the corticospinal tract.)

A positive Babinski's reflex (or extensor plantar reflex) is consistent with M.E.

The Romberg test will often be abnormal in MS. (This test measures neurological or inner ear dysfunction.)
 
The Romberg test will be abnormal in 95% or more of M.E.patients.

An abnormal neurological exam is usual in MS. Abnormalities are also commonly seen in neuropsychological testing in MS.
 
An abnormal neurological exam is usual in M.E. Abnormalities are also commonly seen in neuropsychological testing in M.E.


MS causes a certain type of brain lesion detectable in MRI brain scans. Abnormalities are also seen in EEG and QEEG brain maps and SPECT brain scans in MS.
 
M.E. causes a certain type of brain lesion detectable in MRI brain scans. Abnormalities are also seen in EEG and QEEG brain maps and SPECT brain scans in M.E.

Hypothyroidism is found in many MS patients.
 
Hypothyroidism is found in almost all M.E. patients.

The glucose tolerance test is often abnormal in MS.
 
The glucose tolerance test is often abnormal in M.E.

Low blood pressure readings (usually low-normal) are common in MS.
 
Low blood pressure readings are extremely common in M.E. Severely low blood pressure readings as low as, or lower than, 84/48 (or 75/35 according to many anecdotal accounts) are common in severe M.E. or those having severe relapses. This can occur at rest or as a result of orthostatic or physical overexertion. At times BP readings can be so low that they cannot be measured by the machine and error messages appear. Circulating blood volume measurements of only 50% to 75% of expected are also commonly seen in M.E.

Patients with MS have an increased risk of dying from heart disease or vascular diseases.
 
Deaths from cardiac problems are one of the most common causes of death in M.E.

Although MS is primarily neurological, it also has aspects of autoimmune disease.
 
Although M.E. is primarily neurological, it also has aspects of autoimmune disease.

MS usually affects people between the ages of 20 and 40 years, and the average age of onset is approximately 34 years. Onset occurs between the ages of 20 to 40 years in 70% of patients.
 
The average ages affected by M.E. are similar to those seen in MS. However, the average age of onset may be significantly younger in M.E.

MS was once thought to be rare in children, but we know that around 5% of MS sufferers are under 18.
 
Around 10% of M.E. sufferers are under 18.
 
MS affects more than a million adults and children worldwide.

M.E. affects more than a million adults and children worldwide.(M.E. is at least as common as MS, and may be up to twice or three-times as common.)

Permission to re-post by the author, Jodi Bassett
* * *
Shortly after I was diagnosed with CFS (a/k/a ME a/k/a Post Viral Syndrome), a woman at church was diagnosed with MS.  They fawned over her, sending her volunteers.  Not only did they not send me volunteers, they called me lazy and selfish when I said that I was too sick to do my own housework, much less go over and do hers.  She quit her job immediately on diagnosis, I was still struggling to work, but I was the one accused of being "too lazy to work".  Etc., etc., etc.
 
Since our symptoms were almost identical, I demanded an explanation from my specialist, why she got the respectable diagnosis and I got the one that generated nothing but disrespect?  The answer was that she had one symptom that's seen in MS but not in CFS, and I had a symptom that's seen in CFS but not in MS. 
 
I'll note that while Jodi says CFS patients get worse in heat, Dr. Bell says precisely the opposite, that he diagnoses the difference because CFS patients feel better in heat and worse in cold, while MS patients feel worse in heat and better in cold.  I'd be inclined to believe Dr. Bell, simply because when it gets cold, I feel dreadful and can't wait for winter to end so I'll feel better.  Thankfully, I live in a place that has a very short winter and a very long summer.

Thursday, August 5, 2010

Check out Why I write 'Empowered Patient' - CNN.com

 

About 99,000 people die each year from infections they acquire in the hospital, according to the Centers for Disease Control and Prevention.

Nearly as many die from medical errors in hospitals, according to an Institute of Medicine report. When you see the doctor, studies tell us, the diagnosis will be wrong as many as one out of four times, according to a report by the Agency for Healthcare Research and Quality.

One out of 14 times that you have an abnormal test result, the doctor will fail to let you know, according to a study published last year in the Archives of Internal Medicine.

* * *

This is for all those who think that doctors are gods and that I'm wrong to say they're not.

Wednesday, August 4, 2010

Fluctuation of serum vitamin E (alpha-tocopherol) concentrations during exacerba

Fluctuation of serum vitamin E (alpha-tocopherol) concentrations during exacerbation and remission phases in patients with chronic fatigue syndrome.

Journal: Heart Vessels. 2010 Jul;25(4):319-23. Epub 2010 Jul 31.

Authors: Miwa K, Fujita M.

Affiliation: Department of Internal Medicine, Nanto Family and Community Medical Center, 577 Matsubara, Nanto, Toyama, 939-1518, Japan, <k-3wa@pm.ctt.ne.jp>.

NLM Citation: PMID: 20676841


Abstract

The etiology of chronic fatigue syndrome remains unknown. Oxidative stress may be involved in its pathogenesis. Vitamin E is a major endogenous lipid-soluble antioxidative substance, and is consumed during the lipid peroxidation process.

We studied a population comprising 27 patients with chronic fatigue syndrome (10 men and 17 women, 29 +/- 6 years of age) and 27 age- and sex-matched control subjects. Serum vitamin E (alpha-tocopherol) concentrations were determined and expressed as mg/g total lipids (total cholesterol and triglyceride) to evaluate oxidative stress.

Serum alpha-tocopherol concentrations (mg/g lipids) were significantly (P < 0.001) lower in the patients with chronic fatigue syndrome (2.81 +/- 0.73) than in the control subjects (3.88 +/- 0.65). The patients with chronic fatigue syndrome were re-examined during a follow-up interval. After 8 +/- 2 months, 16 patients exhibited a status that warranted re-examination during remission of the symptoms at a regular visit to our hospital (Group 1), while the remaining 11 did not (Group 2). The serum alpha-tocopherol levels were significantly elevated during remission as compared with those at baseline in Group 1 (2.71 +/- 0.62 --> 3.24 +/- 0.83, P < 0.001). The levels did not significantly change after the interval in Group 2 (2.97 +/- 0.86 --> 2.85 +/- 0.73, not significant).

In conclusion, serum alpha-tocopherol concentrations were significantly lower in the patients with chronic fatigue syndrome as compared with the control subjects, suggesting increased oxidative stress in the former. The low level of serum alpha-tocopherol was ameliorated during the remission phase as compared with the exacerbation phase in the patients with chronic fatigue syndrome, suggesting that increased oxidative stress may be involved in the pathogenesis of chronic fatigue syndrome and might also be directly related to the severity of the symptoms of chronic fatigue syndrome.
 

Tuesday, August 3, 2010

Norwich (UK) Treatment Centre Planned

Norwich centre for ME sufferers planned
SARAH HALL
Last updated: 03/08/2010 15:00:00

http://www.edp24.co.uk/content/edp24/news/story.aspx?brand=EDPOnline&category=NewsSplash&tBrand=EDPOnline&tCategory=xDefault&itemid=NOED02%20Aug%202010%2021%3A42%3A06%3A493


Hope was last night offered to thousands of people with ME after it
emerged crucial talks were under way to establish a world class
research and treatment centre in Norwich.

Campaigners have spent years trying to improve the lives of people
with the debilitating condition, for which there is currently no cure
and affects 10,000 people in the eastern region alone.

Now talks between Dr Ian Gibson, the national Invest in ME charity,
the UEA and NHS Norfolk have taken place with the view of setting up a
centre to properly research, diagnose and treat the illness. If it
goes ahead, it will be the first centre of excellence in the country
and firmly put Norwich on the map of advancing medicine and
healthcare.

ME (myalgic encephalomyelitis), also known as chronic fatigue
syndrome, is a contentious illness because for years clinicians and
other medical professionals refused to recognise it and it was often
dismissed as "yuppie flu", despite causing years of complex problems
such as overwhelming tiredness, swollen glands, painful muscles and
joints, and severe sleep difficulties.

However, years of campaigning and hard hitting inquiries in the
condition - one of which was held by former Norwich North MP Dr Ian
Gibson - has raised further awareness and understanding of the
condition.

Dr Gibson said: "This centre could totally change the lives of people
with ME. At the moment there is no proper diagnosis for ME and
treatment is patchy. We would do research here and, as this develops,
we can treat patients from all over the country and the rest of
Europe.

"This is a great opportunity to treat chronically ill patients who
have maybe not had proper treatment in the past.

"There are 250,000 people [nationally] with ME and this could finally
make a difference to all of them."

There are preliminary discussions to establish at the research centre
at the UEA - because the equipment and research facilities are already
there - with services commissioned by NHS Norfolk.

The service would offer early diagnosis, examination and treatment of
the illness, with diagnosis commissioned by NHS Norfolk and referals
made through GPs.

In Norfolk and Suffolk there are an estimated 4,000 people with ME
from the age of six and above.

Richard Simpson is the founder of Invest in ME which campaigns for
research and funding to establish causes and an understanding of the
illness. The independent charity will carry out the official
campaigning for funding for the centre once a formal agreement is
made.

He said the research being proposed would be the "most advanced possible".

"ME is not often diagnosed properly because doctors often eliminate
other illnesses and then conclude it could be ME without proper tests.
The patients do not get treated properly," he said. "Early diagnosis
is so important and this centre would help establish that happens.

"It will start smaller and just get bigger. At the moment nobody is
getting better. It is a hideous illness and people suffer a lot and
some die from it.

"There is no other illness which affects so many people yet is so unrecognised and so underfunded. It is not right that people have to
travel abroad to get the right treatment. It would be so fantastic to
carry out all these functions in Norwich and the next few months are
crucial in terms of pressing ahead with this. We won't give up the
fight until we are treating ME properly."

Mr Simpson, from Norwich, and his wife Pia set up the charity after
both their daughters developed ME. Annika Simpson, 24, has had it for
11 years and Jennifer, 20, for seven years.

They are basing the new centre on an American clinic called Whittemore
Peterson, an institute for neuro-immune disease in Nevada which helps
thousands of people with ME through research, scientific developments
and subsequent treatment.

The charity already has support from other charitable organisations
and clinicians.

Discussions will be going on over the next few months and once a
decision has been made, funding will begin to the tune of £150,000 a
year.

A spokeswoman from the UEA said: "Preliminary discussions have taken
place, but no decisions have been made at this stage.

"Whenever any new centre is proposed at the University, there has to
be very detailed exploration of logistics and implications for the
department concerned before any commitment is made."

Dr Gibson and Mr Simpson were hoping the Norfolk and Norwich
University Hospital would be become involved by setting up clinics,
but bosses have said they have no plans to see patients there so they
are looking at suitable services across the county.

In 2006, a parliamentary group headed by Dr Gibson spent a year
looking into ME, taking evidence from sufferers, carers and experts,
and he argued for massive investment, which has yet to materialise.
 

Another oldie but goodie worth a re-read

 

Monday, August 2, 2010

American Disabilities Act, and a Fall That Opened My Eyes

 
"Though substantial progress has been made in education attainment for people with disabilities, other indicators suggest that there are still numerous roadblocks to equality.

Only 21 percent of all working-age disabled people are employed, compared with 59 percent of people without disabilities, according to a 2010 survey conducted by the National Organization on Disability in conjunction with the Kessler Foundation. Nearly half of people with disabilities (43 percent) reported they have experienced some form of job discrimination in their lifetimes. People with disabilities are more than twice as likely to be living in poverty than people without disabilities, and are significantly less likely to socialize with friends, relatives, or neighbors.

Strikingly, the survey reveals that 61 percent of disabled people believe that the Americans With Disabilities Act has made no difference in their lives."

* * *
 
The ADA says that I'm entitled to a job, but it doesn't say employers can't change the job description to ensure that I don't qualify.  I applied for one job where I was told I was the front-runner until my health issues came up as a reason why I could not do one small portion of the job -- less than 1% of the time -- and I described how it could be worked around, offering even to pay the cost myself.  Suddenly, the job description was changed and the successful applicant had to speak Chinese.  Not because they had any clients who only spoke Chinese, but because it was the one thing on their second choice's resume' that was not on mine.  That meant that they were hiring her because she fit the (rewritten) job description, not that they weren't hiring me because I have a disability.
 
A large chain store rewrote their policy to say that every cashier must take a turn of doing certain physical tasks; voila, those who are disabled no longer qualify for cashier jobs.  And by getting rid of the disabled, the cost of the health insurance goes down.
 
People complain about the disabled being on the dole, but not about the fact that employers won't hire us nor about the fact that the government will spend billions to bail out millionaires who run Wall Street, but won't help the disabled become entrepreneurs.  VocRehab will place you in a job with someone else's company, but is not eager to find funding to help you start your own business so you won't be dependent on someone else's whim to replace you with a healthy person. 
 
 
 
 
 
 
 

A matter of perspective

The fact that you function at all with fibromyalgia is often a miracle.– Devin Starlanyl, M.D.
 
 
A discussion came up in a group today about how much those of us in pain can accomplish despite our disability.
 
And it's true -- so often people focus on what you CAN'T do, and they miss the value of what you DO accomplish.  I cannot whip this house into shape in one day as a healthy person could, I don't have that much stamina for physical exertion, but I have accomplished a number of things so far today. 
 
People are so focused on the fact that my house is no longer spotless that they don't see the long list of things that were done:
  • breakfast, lunch and dinner prepared, eaten, and cleaned up after (and some of them were even balanced meals!)
  • cobweb removed from kitchen window while waiting for dinner to be ready
  • cat fed and watered
  • cat box scooped
  • walked to the front door to bring in the newspaper, read it, did some of the puzzles, and it's now in the recycling bag
  • walked to the front door a second time to bring in the mail, which I have sorted into "urgent" and "not so much" and dealt with the urgent stuff
  • transferred money into the checking account to cover the check I wrote
  • read and responded to several business-related e-mails
  • solicited a new client
  • sent monthly invoices to my existing editing clients
  • reviewed the latest flyers for my Tupperware business  
  • did some knitting on a baby gift for a friend
  • started packing a gift box for my best friend
  • looked through two catalogues in search of Christmas gifts
  • faxed orders for Christmas gifts
  • wrote three letters to disabled friends who don't have internet access
I'm not lying in bed doing nothing while the servants wait on me hand and foot.  My back hurts, so I haven't been moving the boxes that need to be moved, but it's not like I haven't accomplished anything today.  Just not the stuff that would be visible to anyone who's only looking at the tidiness of the house and is blinded by the fact that those boxes are still in the way.
 
 
 
 
 

ME MIMICS CAN EXPLAIN LIGHTNING PROCESS ACCLAIMED SUCCESSES

ACT: ME MIMICS CAN EXPLAIN LIGHTNING PROCESS ACCLAIMED SUCCESSES.
 
In Science and medicine there is no such thing as a free lunch. Bones do not mend simply because we will or wish them to do so but according to established processes in biology, contingent on variables such as health status, age and other absolute factors. Disordered genes that result in Huntington's disease or Down syndrome, never ever get better, no matter how much we try with methods such as the Lightning Process (or that we shell out monetarily) to circumnavigate sheer chemistry and molecular biology.

It is an absolute truth, therefore, that whenever we encounter claims that apparently contravene these organic facts, such as 'people getting cured from Lyme Disease or HIV' by way of affirmations, it is scientifically certain that it is because some confounding variable has been overlooked and dealt a deceptive hand.  
 
A good example of this are the ME-acclaimed success accounts of the Lightning Process (LP), the latest magical conjuring trick to come to town. The only lightning thing about this therapy is the speed at which money vanishes, in a flash, from your bank account. Let's see how easy it is to be mislead - and ripped off.

One medical disorder that closely mimics ME is the commonly occurring viral condition Glandular Fever (GF). This condition certainly goes a long way to explaining the so-called success story of the LP in 'curing' ME, in occasional apparent cases, for several reasons.
It is believed that many young persons can contract the GF virus a-symptomatically and so never know they have been infected. But in some cases an immune response is initiated resulting in a symptom profile that eventually reads like ME, especially for myalgia, pain, sleep disorder and profound fatigue, with cognitive haze.

There are, however, early initial differences as well, since ME long-term is not known for fever or even necessarily the overt glandular signature typically encountered in acute GF. And GF generally resolves within several weeks to months at most. But effects such as physical and cognitive fatigue can persist for considerably longer, well after the initial temperature and glandular indications have subsided. And GF patients can be shown to harbour representations of the Epstein Barr virus that is the culprit 18 months after the initial condition onset.

The natural parental and medical concern for young people contending with ill-health is expressed especially so in Glandular Fever where it has been common universal practise to advise extended rest and curtailed activity for periods of time well beyond the expression of the evident physiological manifestations of fever and lymphatic involvement. And that's a first clue.
 
But this cautious behaviour on behalf of carers, medics and the GF patient themselves, can lead to a profound illusion in terms of acclaimed interventions such as CBT/GET  and the LP. Patients with extended cognitive and physical fatigue seen in months following some GF cases can come to be labelled as 'ME' casualties. We have seen clear indications of this over the years - and one You Tube Internet clip currently reporting the Lightning Process, for example, refers to a youngster as having had 'ME' for four months before being cured in two sessions. This is a misdiagnosis and shows that some LP apologists, at least, don't actually know what they are talking about. So there was another clue. ME goes much beyond such time bounds.
 
Under constrained circumstances and over time the 'self and other' imposed restrictions on activity, actually recommended in Glandular fever, will mask the slow but generally inevitable recovery that occurs from the virus and which process can take up to a couple of years, by some accounts. It is during this already established recovery phase that the well-meaning and protective parents may unfortunately discover interventions such as CBT/GET or the LP for their 'ME' concerns.
In such events, it is therefore easily conceivable that these 'treatments' act behaviourally and psychologically for all concerned - by simply providing definitive permission to discard the stringently imposed restraints on activity that medics recommend for GF patients.

The apparent LP 'ME-miracle cure' that emerges is nothing more than the fact that the individual has been recovering all along from GF, and which condition mostly gets better anyway, with the rest, in spite and despite what patients do. LP therapy for many is just like deciding, after an appropriate time, to removing an elastoplast that once covered what was a naturally healing wound.       

A final clue, a dead give away in fact, to the distinct plausibility of this scenario is a repeated observation, and one made only recently again on these pages by a pro-LP parent who like us has noted often that 'the LP seems to work especially well on younger people,' children, juveniles and young adults - the very age category of individual who are by far the most susceptible to GF and its protracted fatigue (ME like) consequences.
This largely age-specific Glandular fever incidence, with the largely age-specific Lightning Process acclaim, I propose, may not be a co-incidence

Similarly, when our North Wales CBT/GAT Clinics were announcing a level of success for 'self efficacy' and 'improved outdoor working and social life' for 'ME' patients at local Conferences up here, we pointed out to them (2004), among other criticisms, that these effects were easily explicable in terms such as those described for GF recovery in some of their 'newly diagnosed' (sic) referrals. An 'A' level stats-student, attending their first evening class, should have been able to spot that explanation - but not the Clinics. And as we have noted before, the Welsh CBT/GAT Clinic's 'research findings' were soon buried in the light of similar criticism we also made, and it is easily likely that a comparable dynamic is operating and being paraded as 'recovery' by the LP illusionists as well.


For these reasons, the proposed impending attempt to investigate the LP on children and young adults, therefore, contains an experimentally 'contaminating variable', and which like the Welsh CBT Clinic's research, also completely invalidates the intended UK Bristol study without a doubt, unless the possibility of post-GF recovery, for example, is carefully factored out first. We want Bristol to test experienced, perspicacious adults, if they really must test anyone using the LP, and those with verifiable ME. In fact, we seriously wonder why child subjects have evidently been selected specifically in the first place?... no more tricks please! 

In the meantime, of course, the fact remains that individuals who do have ME specifically, and who undertake potentially damaging therapies such as CBT/GET and the LP may be made much worse (as many have in N Wales), and at an organic-molecular level (Twisk, Jason and others), long and short term, as a consequence.

How can anyone, soundly in the know, believe that prancing back and forth absurdly, gesticulating and muttering health and recovery affirmations can mend broken bones, de-myelanated nerve-axons in MS, for example, or 'cure ME'?
 
Karl Krysko. N Wales Research Forum.
 
May be reposted.