CFS is not a disease at all, it is a symptom.

[mitty999]

CFS is not a disease at all. Many illnesses have severe fatigue as a symptom, like Polio, Rheumatoid Arthritis and many more. However we don`t call Polio" Chronic Fatigue". ME. starts as a virus similar to Poliomyelitis and there is strong evidence to suggest it causes brain damage. Specialists in the USA point out that in nearly every case absolute enforced rest is by far the safest route and results in the fastest recovery. Exercise of any kind is the worst possible thing you can do, only to exacerbate the condition.

In fact there are cases where the patient has died due entirely to over-exercise. ME causes potential damage to occur to most organs in the body. There is strong evidence to show that the mitochondria are damaged or reduced and this, in affecting the heart does not allow enough oxygenated blood to reach the organs of our bodies, hence the orthostatic stress often involved. The very worst thing you can do is to exercise, hence the terrible failure of this approach called "pacing " in the US. But in order to receive financial benefit people are forced to participate, and thousands are getting worse and worse.

More research is needed to find the real answer to what this disease actually is.

There are different degrees of ME. I myself, am bed- bound and have been for two years. If I even attempt an hour or so watching the television I hit an invisible wall and become very ill indeed. I know of cases where people have taken hours to make it to the bathroom and hours to get back with a lengthy stay in the bathroom to rest enough to get enough energy to return.

There are cases where a degree of exercise has helped to an extent, but these are probably very mild cases. I cannot stress enough the danger of exercise without the presence of fully trained medical staff.

I have studied many papers written by specialist research groups all over the world. There is so much more to read as I believe it is up to the patient to diagnose themselves and make their own decisions about this terrible decease , as very little is taught in medical schools about ME.

So much can be done by following a strict diet and taking supplements to make up for the shortfall this illness causes to the body. And then, there is the pain. It is so excruciating in many cases that hospital stays and care is required to manage the drugs needed in these matters. I take Codeine , Morphine and Paracetamol and I am never free form pain. Some people get far worse pain.

Please realise that 17 million people are suffering from this disease right now, and in many countries help is not available.

There are a number of sites online where you can read the very latest research on ME. There is one very large organisation where doctors from many countries are doing work entirely sponsored by charity. Their findings are vast and their work is backed by hard facts. I would ask you to spend a few minutes to take a look, I think you will be amazed. Please take a look at :

The Hummingbirds` Foundation for ME.

THE TRUTH IS OUT THERE.........please help us find it.

Thanks for reading this.

[Effort]

Wishing you well with the medical politics.

[myhealthneeds in reply to Effort]

That is an excellent piece of writing. Thank you so much!

Miriam

[peterki55]

Have you considered vitamin B12 deficiency. Check out the remarkable stories of Sally Pacholok in the USA and Dr Joseph Chandy in County Durham, UK b12deficiency.info/films/

I have just been diagnosed with B12 deficiency and experience many symptoms of CFS

Regards

PK

[mitty999 in reply to peterki55]

Hi ! I have been tested for all vitamin deficiencies . I have more than normal in every case, as I take many supplements. I have also been through many other drugs for pain , only one helped, Duloxetine.

I have recently seen a pain specialist and was told that nothing more could be done that did not threaten my life. The doctor actually said that suicide was the only option left. This is totally true and two people from my family witnessed this......we are speechless. When I complained we were asked to leave the hospital pronto !!! This was at Warwick pain clinic.

Neither will my doctors come to my house : they never have even when I was out of my mind with pain. I do not complain more than any sane person would, and the surgery is less than 1 mile away ! They point blank told me not to ask under any circumstances . They have told me that they don't understand ME and will only give me the basics of palliative care.

There is another doctors surgery, but they also told me that they cannot treat ME . They suggested I look towards religion for help. I cannot do this as I do not believe anything the church tells me. I am a scientist, not a disciple of any god.

So, the only thing left is to approach my MP. and put in a formal complaint against my doctors. I have complained once before when they kept fobbing me off when I asked for an appointment about my ME. However they wrote a letter packed with lies : mentioning tests and X rays that I have not had !

My wife has had 2 strokes , as she has cysts on her spine. I don't want to put her under more stress.

Not easy being ill, is it ?.

Please excuse the moaning but I am at the end of my tether and stuck in bed 23 !/2 hours a day.

[thomasruss4]

on the pain relief available - the stuff you are taking helps ONLY with musculoskeletal pain - bones and muscles - you could add oromorph ... but you need a whole new set of drugs for nerve pains ARISING FROM SPASTICITY AND NUMBNESS which underly all the autoimmune diseases ... most frequent is GABAPENTIN - but if that doesn't help there are alternatives.

There are also non medical pain reducing methods such as MINDFULNESS

[sil1564]

hello my research has taken me to yeastadvisor.com i researched CANDIDA ALBICANS every body has yeast male /female when ill and given antibiotics the yeast will grow and attach itself to your organs due to good bacteria been killed as well as bad , then it starts to live on what you intake as food you become a host more you feed it with false sugars or processed foods mor e it will grow and take over organs to my belief that is why you feel your dying on the inside but look perfectly healthy on the out side .... the natural process of yeast in our bodies is help with shutting the body down in death , ilook at it as a natural way to embalm .... i read that an M E patient donated her body for research when she died her body was opened up and she was riddled in yeast true story made the press in the UK they thought nothing of it because its a natural process in death .....yeast in the body gives the organs no oxygen hope this helps towards your research thanks Sil

[mitty999]

Hi ! All , I have been tested for virtually every know deficiency , every B vitamin, yeasts, C, D1 d3, many enzymes, had scans and other than ME I am meant to be as fit as a flea.

What some people do not realise is just how terrible ME can be (please do not say CFS it is a SYMPTOM only ) Recently I awoke in the night in unbelievable agony all over my body. I got a little help by adopting the foetal position with my hands on my head. Nothing helped, Morphine did not touch the pain I had taken 240mg of codeine, but that is just Morphine in another guise.. I have not had Xenon SPECT scan for brain damage, I think the government will not wear the cost. I take over 36 different tablets a day, to make up for the way ME has sapped my body of nutrition. I am under an ME specialist and a nutritionist.( there are certain foods I cannot eat now ? ) Yes , Gabapentin and many others...I have tried, only Morphine works, as well as Oramorph for the breathlessness of course.

Basically, people with ME need the Government of Britain to put some money into research. HOW CAN WE CRY OUT ? when we are in so much pain ? I my opinion

this total ignorance is tantamount to legal TORTURE. It is interesting to note that one Lady Doctor who had ME and badly, suggested that everyone who doubted the existence of ME , be given the disease to see how they felt after a few months.

A bit drastic, I think, but I know what she is getting at.

WE need a way of getting our feelings felt at Government level.

Regards to all....MITTY999

[sarkan]

ME is caused by a virus in previous contaminated vaccines,yes it can be passed genetically as it slots itself into a part of your DNA,this doesn't mean your children WILL get it but have a greater chance.check out Dr Judy mitovich video,she has evidence of this,our government won't research it coz it is the vaccines that they call safe that has caused it in the 1st place,that's y they send every1 down the psychological route-so every1 will believe it psychological. I've had it myself at exactly same time as my sister &my son now has it he's 13.nothing will convince me otherwise of this.

[mitty999 in reply to sarkan]

Hi ! I have read what you say, and I do not agree with your description of the disease that is Myalgic Encephalomyelitis. One doctor does not make a hospital or large accredited research centre. The main reason research is not done on ME is money, or lack of it. ME has been around since the 1930s and since then there have been over 60 outbreaks confined to certain places around the globe. Vaccines for this were not available then in any form for ME. In the 1980s USA and the UK got together and had a large symposium and at the US`s suggestion the name CFS was formed. This was mainly to save money. Had the true extent of the disease got out, then governments would be under great pressure to spend money on research. And many people would have been able to claim on health insurance. This was washed away by the term Fatigue. So as "JUST " tiredness was now the issue then doctors could sit on their behinds and decide just how they would treat patients. This led to ghastly forms of forced exercise which we now know is the worse possible thing you can do with ME. Many have suffered terrible effects.

I suggest you read what really happened on a site that has done massive research on ME, not just one opinion. Whilst there may be many other factors, especially recently, there are many other factors involved ,not least the effect on mitochondria and other organelles. Then the effects on the heart, kidneys and liver. The damage to the brain is being studied at present.

Many have permanent brain damage .

Please take the time to visit The Hummingbirds` Guide to ME. They are a large group of doctors and physicians and ME specialists whose` findings cannot be ignored.

There has been numerous announcements which totally deny the possibility of any psychological involvement. Except, of course, that such a severe and incredibly painful illness causes many people to drop into extreme depression and suicide.

I take what you say and except any expert findings, but ME is far more than infected vaccines. The majority of specialists now are certain that the virus that causes ME is one similar to Polio which is an enterovirus. ME begins with symptoms similar to Polio and also Multiple Sclerosis. I suffer from symptoms similar to MS myself. I have spent more than 2 years studying nearly every medical papers on ME, I am confined to bed and rely on morphine to get by.

Please do not be offended by my comments, my only intent is to get our government up and really running on large scale funded research so people like yourself and others are finally treated with the respect they deserve.

My regards Mitty

[TheLadyOfShalott in reply to mitty999]

Hi mitty, I think most people who have had M.E for a long time are familiar with hfme.org, enteroviruses, Byron Hyde, Dowsett, Chia, the Nightingale foundation etc. I believe in this case, sarkan is referring to 'Plague: One Scientists Intrepid Search for the Truth about Human Retroviruses and ME/CFS, Autism and Other Diseases' by Judy Mikovits and Kent Heckenlively. I'm not well enough to read much (certainly not whole books) but I managed the foreword by Hillary Johnson and it is excellent; I highly recommend you read even just that if you feel up to a read, as it'll help you understand sarkan's reference to contaminated vaccines and what s/he means by that. The foreword is available on the Kindle 'sample download' of the book.

I think most patients and researchers agree that M.E is an infectious disease caused by a virus. No matter the mitochondrial dysfunction, brain inflammation, poor blood flow/volume, multisystem and multiorgan involvement, and all the other abnormalities found in 'real M.E.,' these themselves are manifest symptoms of an underlying cause that many think is a virus (some think enterovirus and some think it can only be a retrovirus) that lies dormant until the organism receives a major blow to the immune system (from infection, reaction to vaccine, surgery etc) which actually activates the dormant virus. Elaine de Freitas, Sydney Grossberg and Judy Mikovits are just some who found evidence of retrovirus in M.E patients. They might not know which one it is yet, or whether it's an 'as yet unnamed' one, but that doesn't mean that a retrovirus still can't be the root cause of M.E. Only retroviruses are able to induce interferon production to the extent that is seen in M.E. patients; only retroviruses use the reverse transcriptase enzyme as part of their replication process; and retroviruses are a class of pathogens with the power to cause all the symptoms and outcomes that have been documented - immune deficiency, neuro-degenerative disease and greatly elevated rates of cancer.

If you scroll down this page, to the 15th slide, you'll see a picture taken through a microscope of a retrovirus budding out from an M.E patient's cell. It might not be HTLV-2 or XMRV, but it's definitely there! - plaguethebook.com/invitatio...

Whether enteroviral, retroviral or other *hypothesis,* please do try to read the foreword to 'Plague' as that's necessary in order to understand sarkan's original comment about the viral contamination of vaccines and how that fits in with myalgic encephalomyelitis. Similarities with multiple sclerosis and polio, undoubtedly, but I think 'non-HIV AIDS' is the most accurate name for portraying the horrors we suffer on a daily basis.

☺

[mitty999]

Thank you for that informative narrative. I have watched all the video with Dr Mikovits.

I am still concerned about the reason little research is paid for by government bodies (if any). The term Chronic Fatigue Syndrome still grates with me, I still believe it was a made up term to force ME into the dark and allow horrific practices of forced exercise to exist. The only vaccine I had as a young child was the diphtheria only. In 1956 I had the SALK polio vaccine as my mother was told that it was the only safe Polio one available. It was difficult to get in Britain and entailed a journey to London. I did read that Dr Salk did in fact produce cultures using animal tissue, which "Worked "

I have been engaged for some time in communication with patients in the US. Some tales are pitiful with still the insistence of psychiatric causes and resultant treatments.

Many talk of being almost forced into extremely painful pacing, sounds very unfair as many are forced to follow these rules in order to get illness benefit.

Mitty.