HHV-6 has long been linked to ME/CFS, but the virus is present in most people to some degree, and researchers have not been able to successfully demonstrate that it was a primary cause of the illness in all or many ME/CFS cases.
Friday, 23 August 2013
National CFIDS Foundation (NCF) Announces Link between Chronic Fatigue Syndrome and Low Level Radiation Exposure
The National CFIDS Foundation Inc., of Needham Mass, has announced its formal disease model for Chronic Fatigue Syndrome (CFS) also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) as well as Myalgic Encephalomyelitis (ME). According to the NCF, a subgroup of patients with CFS fit a unique disease profile based on a model for a radioactive toxin.
Thursday, 22 August 2013
A new study has shown that serious illness, struggling to hold down a regular job and poor social relationships are just some of the adverse outcomes in adulthood faced by those exposed to bullying in childhood.
I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?
All of these things conspire every late-summer/early fall to make me achy, run down, foggy, and all around not good. I know that extra pacing, rest, and keeping up with my treatments helps, but so far I haven't been able to find anything that really takes the "bleh" out of it.
Monday, 19 August 2013
A recent review of case studies revealed interesting information about heart-rate variability (HRV) in both fibromyalgia and chronic fatigue syndrome, compared with each other and also with healthy, pain-free people.
Friday, 16 August 2013
Certain foods and chemical additives disguised as food can aggravate or cause muscle and joint pain associated with arthritis, gout and fibromyalgia. Avoiding these foods can pave the way for reduced inflammation, stiffness and pain – setting the stage for ongoing relief, with increased mobility and a better mental attitude. Although it may be a challenge to avoid well-loved foods, keep in mind that many of those foods are causing widespread systemic problems that result in debilitating pain, so they are not your friends.
Thursday, 15 August 2013
ME/CFS probably isn’t one disease, or even a few different ones – but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC), when he addressed the Forward ME Group in the House of Lords on 2nd July. He also argued that a radical New Science was needed to tackle ME/CFS and said patients must be partners in research. Not bad going for one talk.
Wednesday, 14 August 2013
Dizziness, light-headedness and problems with balance are distressing, but can also cause major problems in everyday life, including nausea, problems with co-ordination and walking, and falls that are more frequent. Up to two-thirds of people with fibromyalgia syndrome have problems with dizziness to some degree.
Tuesday, 13 August 2013
Given that circadian clocks are a very ancient evolutionary development, it's likely that many of our bodily processes rely on them for "stop" and "start" signals. If your clock is off, it may not be giving the right "start" signal to the molecules that would normally clear toxins out of swollen tissues — or repair damaged DNA. And over time, this situation can lead to chronic problems.
Monday, 12 August 2013
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening
and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
Thursday, 8 August 2013
So what can we do? I think the biggest thing is to focus on the basic elements that are important to all relationships - communication and trust. If you don't have both of these, it's going to be harder for the two of you to weather the problems posed by chronic illness. They're things that can be improved, but only if both people are willing to work on it.
Sophia Mirza's mum Criona tells how her daughter Sophia unnecessarily suffered and died from the very much misunderstood diesease of ME. Sophia died because of the greed of some doctors and the ignorance of many doctors. ME is a PHYSICAL illness, yet it profits medical insurance companies and the mental health camp to fudge the physical/mental disease line in order for profit. ME/CFS is not a grey area, it is a physical disease not a mental one.
Is the madness currently exhibited by the Department of Work and Pensions a symptom of the Secretary-in-a-State’s personal condition, or an indication of a much wider malaise?
This is a question we should be asking, publicly, with increasing frequency as each new revelation about the Department’s irrational behaviour is revealed.
Do chemicals bother you? What about hygiene products, or the laundry-products aisle at the grocery store? If more than one type of chemical gives you negative symptoms, you may have a condition called multiple chemical sensitivity (MCS.) It's common in people with fibromyalgia and chronic fatigue syndrome.
Wednesday, 7 August 2013
Unstimulated cortisol secretory activity in everyday life and its relationship with fatigue and chronic fatigue syndrome: A systematic review and subset meta-analysis
The hypothalamic–pituitary–adrenal (HPA) axis is a psychoneuroendocrine regulator of the stress response and immune system, and dysfunctions have been associated with outcomes in several physical health conditions. Its end product, cortisol, is relevant to fatigue due to its role in energy metabolism. The systematic review examined the relationship between different markers of unstimulated salivary cortisol activity in everyday life in chronic fatigue syndrome (CFS) and fatigue assessed in other clinical and general populations.
People who suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often report that their eye movements are sluggish and that they have difficulties tracking moving objects. However, descriptions of these visual problems are based solely on patients’ self-reports of their subjective visual experiences, and there is a distinct lack of empirical evidence to objectively verify their claims. This paper presents the first experimental research to objectively examine eye movements in those suffering from ME/CFS.
Recall a time when you experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief. It's hard to find the words for that sort of pain.
Tuesday, 6 August 2013
It is estimated that 25% of Myalgic Encephalomyelitis (ME) patients are severely affected – often housebound and/or bedridden and for many years. They have been largely invisible, greatly misunderstood and mostly ignored.
His decision to blow the whistle on practices within Atos made headlines in May, because he was the first Atos-employed doctor to put his career on the line and articulate concerns about a system that has been criticised by charities and claimants for years. Wood gave strong evidence to the BBC to suggest that the methods used to assess whether individuals are eligible for the new incapacity benefit – employment and support allowance (ESA) – were "unfair" and "skewed against the claimant".
The FM test looks for protein molecules in the blood called chemokines and cytokines, which are produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines in their blood, according to Gillis, and as a result have weaker immune systems than normal patients.
Researchers used a process called mid-infrared microspectroscopy (IRMS) to analyze blood from people with fibromyalgia, osteoarthritis (OA,) and rheumatoid arthritis (RA.) They say IRMS revealed patterns unique to fibromyalgia and was able to distinguish it from both OA and RA with 100% accuracy.
Deconditioning was not the cause of the ME/CFS patients declining ability to exercise. If it was, the deconditioned healthy controls would have met the same fate. Nor was lack of effort. An important facet of the full cardiopulmonary (heart/lung) maximal exercise test is that it (and it alone) physiologically determines whether you’re giving your all or not…
About half of a small group of patients with fibromyalgia -- a common syndrome that causes chronic pain and other symptoms -- was found to have damage to nerve fibers in their skin and other evidence of a disease called small-fiber polyneuropathy (SFPN). Unlike fibromyalgia, which has had no known causes and few effective treatments, SFPN has a clear pathology and is known to be caused by specific medical conditions, some of which can be treated and sometimes cured. The study from Massachusetts General Hospital (MGH) researchers will appear in the journal PAIN and has been released online.
Today I read another "but you don't look sick" comment, and it really got my goat (fainting goat of course). The comment wasn't directed at me personally. Although I've heard it enough times over the last seven years, that it raised my hackles once more and had me yelling at the computer screen in defence of the person being attacked.
I'm still perplexed as to what sick looks like. Or what the threshold is as to when you're allowed to say you're sick? And who is the final judge?
It’s taken an organisation with the respect, gravitas and the impartiality of Amnesty International to recognise that the human rights of disabled people in the UK are being attacked by their own Government, and feels a need to act in our defence. That is very encouraging, and perhaps we have reached something of a turning point. I hope so.
Edwardian levels of inequality led to the Great Depression. Austerity measures under Chancellor Hindenburg contributed to the rise of Nazism. The drop in household income in Japan between 1929 and 1931 led to a wave of assassinations of Government officials and bankers. Social policies after World War 2 turned the tables and brought peace, with inequality steadily dropping in Britain until recently. But inequality is now returning to pre-war levels.